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Occupational nominal roll information as a data base for epidemiological research : case study and policy… Embree, Valerie C. 1983

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OCCUPATIONAL NOMINAL ROLL INFORMATION AS A DATA BASE FOR EPIDEMIOLOGICAL RESEARCH: CASE STUDY AND POLICY OPTIONS by VALERIE C. EMBREE B.A., U n i v e r s i t y Of B r i t i s h Columbia, 1974 A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE i n THE FACULTY OF GRADUATE STUDIES Heal t h S e r v i c e s Planning Program We accept t h i s t h e s i s as conforming to the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA May 1983 © V a l e r i e C. Embree, 1983 In p r e s e n t i n g t h i s t h e s i s i n p a r t i a l f u l f i l m e n t of the requirements f o r an advanced degree at the U n i v e r s i t y of B r i t i s h Columbia, I agree that the L i b r a r y s h a l l make i t f r e e l y a v a i l a b l e f o r r e f e r e n c e and study. I f u r t h e r agree that permission f o r e x t e n s i v e copying of t h i s t h e s i s f o r s c h o l a r l y purposes may be granted by the Head of my Department or by h i s or her r e p r e s e n t a t i v e s . I t i s understood that copying or p u b l i c a t i o n of t h i s t h e s i s f o r f i n a n c i a l gain s h a l l not be allowed without my w r i t t e n p e r m i s s i o n . Department of H e a l t h Care & Epidemiology The U n i v e r s i t y of B r i t i s h Columbia 2075 Wesbrook Place Vancouver, Canada V6T 1W5 Date: 27 A p r i l 1983 i i A b s t r a c t E v a l u a t i o n of delayed h e a l t h e f f e c t s of work environments, or o c c u p a t i o n a l h e a l t h r e s e a r c h , has become of i n c r e a s i n g s o c i a l concern. T h i s i s p a r t l y due to the q u e s t i o n of s o c i a l j u s t i c e fo r workers harmed by unrecognized hazards and to the a p p r e c i a t i o n that many p u b l i c environmental p o l l u t a n t s are a d i l u t e d form of a problem i n the workplace where they o r i g i n a t e and t h e r e f o r e are more e a s i l y i d e n t i f i e d and assessed i n the o c c u p a t i o n a l s e t t i n g . Epidemiology i s a t o o l f o r i n v e s t i g a t i n g causes of d i s e a s e and impact of suspected hazards i n human p o p u l a t i o n s . A b a s i c requirement f o r e p i d e m i o l o g i c a l r e s e a r c h i s an i d e n t i f i a b l e p o p u l a t i o n f o r whom an i n f e r e n c e of exposures to p o t e n t i a l hazards can be made. In o c c u p a t i o n a l h e a l t h r e s e a r c h t h i s i s o f t e n an o c c u p a t i o n a l nominal r o l l , or l i s t of people employed i n a p a r t i c u l a r occupation or work s i t e . T h i s paper examines employment records i n the B r i t i s h Columbia c o a s t a l lumber i n d u s t r y i n an attempt to evaluate the q u a l i t y of h i s t o r i c a l employment records as a data base f o r e p i d e m i o l o g i c a l r e s e a r c h . The c r i t e r i a a g a i n s t which they w i l l be e v a l u a t e d are those of S t a t i s t i c s Canada, which maintains outcome i n f o r m a t i o n i n the form of death and cancer r e c o r d s . Issues of c o n f i d e n t i a l i t y i n r e l a t i o n to r e c o r d r e t e n t i o n and l i n k a g e are d i s c u s s e d . Mechanisms and p o l i c y o p t i o n s f o r improving the f i t between employment records and r e s e a r c h needs are presented. i i i T able of Contents A b s t r a c t i i L i s t of T a b l e s v Acknowledgements v i I. EPIDEMIOLOGY, OCCUPATIONAL DISEASE, AND RECORD LINKAGE 1 A. INTRODUCTION 1 B. EPIDEMIOLOGY AS AN OCCUPATIONAL HEALTH RESEARCH TOOL 1 C. EPIDEMIOLOGY: ITS CONCEPTUAL FRAMEWORK AND A CRITIQUE 9 D. OCCUPATIONAL INJURY AND DISEASE AS A SOCIAL ISSUE 13 E. RECORD LINKAGE 17 I I . NOMINAL ROLL DATA BASE CASE STUDY .24 A. INTRODUCTION 24 B. THE CASE STUDY AS A RESEARCH METHOD 25 C. CASE STUDY 27 D. RECORDS 30 1. UNION RECORDS 30 2. COMPANY RECORDS 32 a. Personnel Records 32 b. P a y r o l l Records 33 c. Other Records 34 E. SECONDARY DATA SOURCES 35 1. IWA/FOREST INDUSTRY PENSION PLAN 35 2. IWA/FOREST INDUSTRY HEALTH AND WELFARE PLAN ..37 F. EXPOSURE HISTORIES 38 G. GOODNESS OF FIT 41 I I I . POLICY ISSUES AND OPTIONS 44 A. IMPROVING THE FIT: POSSIBLE MECHANISMS 44 1. FEDERAL AND PROVINCIAL LABOUR LEGISLATION 47 2. OCCUPATIONAL HEALTH AND SAFETY REGULATIONS ...50 3. COLLECTIVE AGREEMENTS ..' 54 4. CONCLUSION 56 B. THE CONFIDENTIALITY ISSUE 57 1. PRIVACY AND CONFIDENTIALITY AS AN ISSUE 57 2. SOME DEFINITIONS ....60 3. INDIVIDUAL VERSUS PUBLIC INTERESTS 62 4. SIGNIFICANCE OF MICROELECTRONIC TECHNOLOGY ...64 5. THE UNIQUE PERSONAL IDENTIFIER ISSUE 68 6. SOME PROPOSALS FOR SOLUTIONS TO THE TECHNOLOGY PROBLEMS 7 0 7. SPECIAL ISSUES RELATING TO EMPLOYER-HELD RECORDS 74 8. GUIDELINES FOR A BALANCING OF INTERESTS 80 C. POLICY OPTIONS 85 1. THE COLLECTIVE BARGAINING ARENA 86 2. THE LEGISLATIVE AND REGULATORY ARENA 89 3. POLICY OPTIONS: CONCLUSION 94 BIBLIOGRAPHY 95 i v A P P E N D I X A - E P I D E M I O L O G Y : D E F I N I T I O N S , H I S T O R Y , M E T H O D S A N D C R I T Q U E 1 0 3 A P P E N D I X B - O C C U P A T I O N A L I N J U R Y A N D D I S E A S E : D I M E N S I O N S O F T H E P R O B L E M 1 1 7 A P P E N D I X C - O C C U P A T I O N A L H E A L T H A N D S A F E T Y - E C O N O M I C T H E O R Y 1 2 1 V L i s t of Tables I. L i s t of Items to be Included i n an Employee H e a l t h -i d e n t i f y i n g Q u e s t i o n n a i r e 23 I I . B.C. Coast Lumber In d u s t r y : I d e n t i f y i n g Information A v a i l a b l e 42 ( v i Acknowledgement I extend my thanks .to f a m i l y , f r i e n d s , f e l l o w students, co-workers and teachers who pro v i d e d support and encouragement while t h i s work was i n p r o c e s s . In a d d i t i o n , I a p p r e c i a t e the members of Community A l t e r n a t i v e s S o c i e t y and p a r t i c u l a r l y my pa r t n e r John fo r i n v o l v i n g me i n an i n t e n s i t y of l i v i n g d u r i n g the l a s t few years which kept t h i s work i n some p e r s p e c t i v e . 1 I. EPIDEMIOLOGY, OCCUPATIONAL DISEASE, AND RECORD LINKAGE A. INTRODUCTION The purpose of t h i s chapter i s to f a m i l i a r i z e the reader with epidemiology as an approach to o c c u p a t i o n a l d i s e a s e r e s e a r c h , with o c c u p a t i o n a l hazards as a s o c i a l i s s u e , and with the s i g n i f i c a n c e of record l i n k a g e f o r r e s e a r c h . B. EPIDEMIOLOGY AS AN OCCUPATIONAL HEALTH RESEARCH TOOL Epidemiology i s the study of the d i s t r i b u t i o n and determinants of d i s e a s e frequency i n human p o p u l a t i o n s . 1 I t i s a b a s i c t o o l of medical r e s e a r c h (Holland and Karhausen, 1978). I t s r o o t s are i n the p u b l i c h e a l t h movement and the a p p l i c a t i o n of q u a n t i t a t i v e reasoning i n the study of di s e a s e i n the mid-ni n e t e e n t h c e n t u r y i n B r i t a i n and France ( L i l i e n f e l d and L i l i e n f e l d , 1980). The e a r l y focus of epidemiology on i n f e c t i o u s d i s e a s e s has s h i f t e d , as has p u b l i c h e a l t h p r a c t i c e i t s e l f , to i n c l u d e the d e t e c t i o n and e v a l u a t i o n of environmental h a z a r d s 2 and e v a l u a t i o n of the e f f e c t i v e n e s s of medical s e r v i c e s themselves (Friedman, 1974). 3 E p i d e m i o l o g i c a l i n v e s t i g a t i o n s are of three g e n e r a l types: 1 T h i s i s a minor a d a p t a t i o n of the f r e q u e n t l y quoted d e f i n i t i o n p r o v i d e d by MacMahon and Pugh, 1970, which s t a t e s : "Epidemiology i s the study of the d i s t r i b u t i o n and determinants of d i s e a s e frequency i n man." 2 I n c l u d i n g : exposure to land, a i r and water p o l l u t a n t s ; l i f e s t y l e f a c t o r s such as smoking, d i e t , a c t i v i t y ; and medical d i a g n o s t i c and treatment regimes themselves, such as drugs or r a d i a t i o n . 3 See Appendix A f o r a more e x t e n s i v e d e s c r i p t i o n of epidemiology as a d i s c i p l i n e . 2 d e s c r i p t i v e , a n a l y t i c and expe r i m e n t a l . D e s c r i p t i v e s t u d i e s are of t e n the approach chosen to examine new problems, and g e n e r a l l y gather together e x i s t i n g data on who i s a f f e c t e d , what d i s e a s e (or exposure) i s of concern, when the d i s e a s e (or exposure) occurs and where i t occurs, n o t i n g d i f f e r e n c e s i n frequency among l o c a t i o n s . A d e s c r i p t i v e study should p r o v i d e an in f o r m a t i o n base from which to begin to generate t h e o r i e s about why the c o n d i t i o n i n quest i o n occurs (or whether there are p a t t e r n s of problems which should be i n v e s t i g a t e d f u r t h e r i n r e l a t i o n to an exposure). A n a l y t i c s t u d i e s t e s t hypotheses about d i s e a s e c a u s a t i o n by determining the s t r e n g t h of a s s o c i a t i o n s between v a r i a b l e s , f o r example, between the presence of a di s e a s e and h i s t o r y of a p a r t i c u l a r exposure. 1 These s t u d i e s are " n a t u r a l experiments"; that i s , people are l o c a t e d who have a p a r t i c u l a r c h a r a c t e r i s t i c and then s t u d i e d to see i f they have the hypothesized l i n k e d c h a r a c t e r i s t i c . When the p o p u l a t i o n i s i d e n t i f i e d on the b a s i s of presence or absence of exposure ( u s u a l l y the hypothesized cause) and then i n v e s t i g a t e d to see i f the outcome or e f f e c t p r e d i c t e d (e.g. a p a r t i c u l a r d i s e a s e ) o c c u r r e d , the type of i n v e s t i g a t i o n i s c a l l e d a cohort study. When the p o p u l a t i o n i s i d e n t i f i e d on the b a s i s of presence or absence 2 of an outcome (or e f f e c t , such as a di s e a s e ) and 1 E.g. e p i d e m i o l o g i c a l s t u d i e s demonstrated a s t r o n g a s s o c i a t i o n between lung cancer and a h i s t o r y of heavy c i g a r e t t e smoking. 2 Note: the p o p u l a t i o n s e l e c t e d f o r absence of the exposure ( i n cohort s t u d i e s ) or absence of the outcome ( i n c a s e - c o n t r o l s t u d i e s ) are r e f e r r e d to as " c o n t r o l s " i n both kinds of s t u d i e s . 3 then i n v e s t i g a t e d f o r h i s t o r y of exposure t o the h y p o t h e s i z e d c ause, the study i s c a l l e d a c a s e - c o n t r o l s t u d y . C ohort s t u d i e s s e l e c t a p o p u l a t i o n on the b a s i s of exposure ( u s u a l l y h y p o t h e s i z e d cause) and i n v e s t i g a t e the e x t e n t of the p r e d i c t e d e f f e c t , or outcome. C a s e - c o n t r o l s t u d i e s s e l e c t a p o p u l a t i o n on the b a s i s of outcome ( u s u a l l y a d i s e a s e of concern) and i n v e s t i g a t e the e x t e n t of exposure t o the h y p o t h e s i z e d c a u s e ( s ) . A d e t e r m i n a t i o n of c a u s a t i o n from a n a l y t i c s t u d i e s i s a mat t e r of judgement based on a number of f a c t o r s , i n c l u d i n g the s t a t i s t i c a l s t r e n g t h of the a s s o c i a t i o n , the c o n s i s t e n c y of the a s s o c i a t i o n over r e p e a t e d s t u d i e s , the s p e c i f i c i t y of the a s s o c i a t i o n , and i t s b i o l o g i c a l p l a u s i b i l i t y . (Fox e t a l . , 1970; MacMahon and Pugh, 1970) E x p e r i m e n t a l s t u d i e s i n v o l v e i n t e r v e n t i o n on the p a r t of the r e s e a r c h e r t o i n t r o d u c e , m o d i f y or reduce a r i s k f a c t o r and e v a l u a t e the e f f e c t . T h i s i s u s u a l l y a r e s e a r c h d e s i g n o p t i o n i n the e v a l u a t i o n of h e a l t h s e r v i c e s , such as e d u c a t i o n or s c r e e n i n g programs, or i n c l i n i c a l t r i a l s of new t r e a t m e n t or drug regimes. For a f u l l e r d i s c u s s i o n of e p i d e m i o l o g i c a l r e s e a r c h d e s i g n s , see Appendix A. Some of the major d i f f i c u l t i e s of e p i d e m i o l o g i c a l s t u d i e s and t h e i r r e s u l t s a r i s e from i n f o r m a t i o n i n a d e q u a c i e s ( f o r example, completeness and a c c u r a c y of exposure r e c o r d s or 4 d i a g n o s i s and/or cause of death r e c o r d s ) 1 , v a l i d i t y of p a r t i c i p a n t s e l e c t i o n (e.g. a v o i d i n g s e l f - s e l e c t i o n , or vo l u n t e e r b i a s ; s e l e c t i n g a meaningful comparison group), a n t i c i p a t i o n of p o t e n t i a l confounding v a r i a b l e s , and adequate resources (Sources f o r t h i s d i s c u s s i o n are Elwood and Elwood, 1980; S i e m i a t y c k i et al.,1981; C a l k i n s et al.,1980). A great d e a l of c o n t r o l over completeness and accuracy of in f o r m a t i o n i s p o s s i b l e with s t u d i e s where data c o l l e c t i o n occurs a f t e r the study has been designed; however, these are f a i r l y rare events and do not o f f e r much immediate a s s i s t a n c e to the problems of workers exposed h i s t o r i c a l l y to p o t e n t i a l hazards, e s p e c i a l l y where the l a t e n c y p e r i o d of the d i s e a s e s of concern may be two or three decades. More common i s the study using a l r e a d y e x i s t i n g r e c o r d s , which u s u a l l y have been generated f o r other purposes (e.g. p a y r o l l , medical plan payment). In these s t u d i e s , the l i m i t a t i o n s may be profound I t i s important to recog n i z e that the contents of records are i n f l u e n c e d by many f a c t o r s , a good number of which may be unknown to the secondary user. For example, employers' job l i s t s i n the c o a s t a l lumber i n d u s t r y may use a job t i t l e " p u l l e r " . T h i s job category may encompass p o s i t i o n s on pr o d u c t i o n l i n e s c a r r y i n g c h e m i c a l l y t r e a t e d lumber and l i n e s c a r r y i n g u n t r e a t e d lumber. The job r e c o r d masks what may be an important d i f f e r e n c e i n exposure, yet there may be no b e t t e r way to e s t a b l i s h exposure h i s t o r i e s than on the b a s i s of e x i s t i n g job c a t e g o r i e s . Another example i s th a t of i n a c c u r a t e d i a g n o s i s or treatment records made by physcians, sometimes f o r the e x p l i c i t purpose of ensuring c o n f i d e n t i a l i t y to t h e i r p a t i e n t . T h i s phenomenon has been widely d i s c u s s e d i n reviews of s u i c i d e r a t e s and i n t e r n a t i o n a l p a t t e r n s of r e p o r t i n g . These examples are given o n l y t o t o i l l u s t r a t e t h a t i n any r e c o r d system, there may be p a t t e r n s of d i s t o r t i o n or ambiguity that have a r a t i o n a l e u n r e l a t e d to the apparent r e c o r d keeping purpose. Any systematic d i s t o r t i o n of t h i s nature w i l l of course reduce the v a l i d i t y of e p i d e m i o l o g i c a l r e s e a r c h which r e l i e s upon e x i s t i n g r e c o r d s . 5 (e.g. only l a s t occupation may be recorded i n a medical r e c o r d and then, perhaps not s p e c i f i c a l l y enough to be u s e f u l i n c l a r i f y i n g exposures). These disadvantages are the non-economic c o s t s of the otherwise r e l a t i v e l y inexpensive and e f f i c i e n t approach to e p i d e m i o l o g i c a l r e s e a r c h that r o u t i n e r e c o r d a n a l y s i s p r o v i d e s . Where i n t e r v i e w i n g supplements r e c o r d search, systematic b i a s may be a f a c t o r i n r e c a l l of i n f o r m a t i o n ( p a r t i c i p a n t s exposed to a p a r t i c u l a r hazard or s u f f e r i n g from the d i s e a s e or c o n d i t i o n under i n v e s t i g a t i o n may remember or r e p o r t events d i f f e r e n t l y than p a r t i c i p a n t s not exposed or not s u f f e r i n g from the d i s e a s e or c o n d i t i o n of c o n c e r n ) . In other words, the p a r t i c i p a n t s may not be b l i n d to the r e s e a r c h h y p o t h e s i s and t h i s may r e s u l t i n r e p o r t i n g or r e c a l l b i a s . Unintended b i a s i n s e l e c t i o n of comparison groups (e.g. a group exposed to a p a r t i c u l a r hazard and a group unexposed, or a group with a p a r t i c u l a r d i s e a s e or c o n d i t i o n and a group from the same p o p u l a t i o n without the d i s e a s e or c o n d i t i o n ) i s another major source of weakened r e s u l t s i n e p i d e m i o l o g i c a l s t u d i e s . I t i s never p o s s i b l e to analyze the c o m p a r a b i l i t y of the p o p u l a t i o n s on a l l p o t e n t i a l l y r e l e v a n t f a c t o r s , even i f i n t e n s i v e i n t e r v i e w i n g were i n c l u d e d . E f f e c t i v e methods f o r s e l e c t i o n of comparable groups w i l l vary depending on the s p e c i f i c c h a r a c t e r i s t i c s of the s i t u a t i o n ; common op t i o n s i n c l u d e s e l e c t i o n on the b a s i s of geographic or time p r o x i m i t y (e.g. neighbor, next h o s p i t a l a d m i s s i o n ) , another working p o p u l a t i o n without the exposure of concern, or s p e c i f i c 6 a l t e r n a t i v e d i s e a s e ( s ) r e g i s t e r e d at the same time. F i n a l l y , resources a v a i l a b l e f o r e p i d e m i o l o g i c a l r e s e a r c h are t i n y i n comparison to the o c c u p a t i o n a l h e a l t h problems needing to be addressed (see a l s o d i s c u s s i o n below and Appendix B). There are severe shortages of t r a i n e d e p i d e m i o l o g i s t s ( D e t e l s , 1978) and economists p o i n t out that i n a f r e e market economy, there are r e a l economic d i s i n c e n t i v e s f o r g e n e r a t i o n of i n f o r m a t i o n (Manga, et al.1981). Since the tasks of g e n e r a t i n g , assembling and p r o c e s s i n g i n f o r m a t i o n i s complex and hence c o s t l y , and s i n c e the d e c i s i o n based on that i n f o r m a t i o n i s l i k e l y to be the same a c r o s s i n t e r e s t e d i n d i v i d u a l s , i t i s i n e f f i c i e n t f o r any one i n d i v i d u a l t o generate the i n f o r m a t i o n ( i . e . c o n t r a r y to any i n d i v i d u a l ' s s e l f - i n t e r e s t ) . There are a v a r i e t y of sources of "market f a i l u r e " , meaning that an unregulated economy ("free market" or n e o - c l a s s i c a l model) w i l l not by i t s e l f a l l o c a t e s u f f i c i e n t resources to o c c u p a t i o n a l d i s e a s e p r e v e n t i o n and compensation (Reschenthaler,1979; Economic C o u n c i l of Canada,1981; Manga et a l . , 1 9 8 0 ) . 1 As a r e s u l t , o c c u p a t i o n a l e p i d e m i o l o g i c a l r e s e a r c h i s u s u a l l y funded by p u b l i c money. However, com p e t i t i o n f o r the p u b l i c d o l l a r i s severe, hence the problem of inadequate r e s o u r c e s . In r e a c h i n g an understanding of the r o l e of epidemiology i n o c c u p a t i o n a l h e a l t h r e s e a r c h , i t may be u s e f u l to examine b r i e f l y the s t r e n g t h s and weaknesses of other s c i e n t i f i c methods 1 For f u r t h e r d i s c u s s i o n of t h i s i s s u e , see Appendix C. 7 of hazard assessment, f o r example, i n v i t r o and i n v i v o (animals) assessment of i n d u s t r i a l chemicals f o r care inogenic i t y . The a t t r a c t i v e n e s s of animal and i n v i t r o s t u d i e s f o r assessment of cancer r i s k to humans i s c l e a r l y r e l a t e d to the r a d i c a l l y shortened time frame r e q u i r e d f o r assessment and avoidance of s u b j e c t i n g humans to experimentation. However, there i s a l s o much r e s i s t a n c e to r e g u l a t i n g chemical use i n i n d u s t r y based s o l e l y on non-human da t a . The assumptions behind e x t r a p o l a t i n g from animal t e s t i n g to humans are r e p o r t e d by S c h o t t e n f e l d and Haas (1978) as: • chemicals that cause cancer i n one or more mammalian s p e c i e s may be capable of c a u s i n g cancer i n humans; • the dose-response curve assumed f o r human beings may be analagous to that demonstrated i n the most s e n s i t i v e animal model; • although i t i s c o n c e i v a b l e t h a t at c e r t a i n dose l e v e l s even potent carcinogens w i l l not produce tumours i n humans, a s u b t h r e s h o l d dose or " s a f e " l e v e l cannot be determined with c e r t a i n t y by animal assays (author's note: nor can l a t e n t p e r i o d s at p a r t i c u l a r dose l e v e l s be determined f o r humans); • higher dose l e v e l s of a chemical carcinogen may i n c r e a s e the i n c i d e n c e of cancers, or of the number of primary cancers per animal, or shorten the l a t e n c y p e r i o d ; • t a r g e t organs f o r tumour(s) observed i n experimental animals may not n e c e s s a r i l y p r e d i c t the type(s) of 8 tumour i n humans (author's note: l a c k of c a r c i n o g e n i c response i n animals does not completely r u l e out the p o s s i b i l i t y of c a r c i n o g e n i c i t y i n humans). The most c o n t r o v e r s i a l i s s u e s r a i s e d by animal t e s t s however are the q u e s t i o n s of a p p r o p r i a t e n e s s o f high dose t e s t i n g , and i n t e r p r e t a t i o n of c o n f l i c t i n g data from d i f f e r e n t s p e c i e s . C a l k i n s et a l . (1980) s t a t e that a consensus i s emerging on these q u e s t i o n s . They s t a t e t h a t high dose t e s t i n g i s necessary to l i m i t time and number of animals r e q u i r e d . They s t a t e that such dose l e v e l s do not imply that s i m i l a r dose l e v e l s f o r humans are r e q u i r e d to e s t a b l i s h c a r c i n o g e n i c i t y . 1 With r e s p e c t to d i v e r g e n t r e s u l t s , C a l k i n s et a l . (1980) s t a t e that the consensus emerging i s "to l e t p o s i t i v e r e s u l t s supersede negative r e s u l t s i n t e s t s i n v o l v i n g d i f f e r e n t s p e c i e s " , given t h a t a p p r o p r i a t e t e s t i n g procedures have been f o l l o w e d i n both. In v i t r o t e s t s f o r mutagenicity, v a r i o u s l y c a l l e d . s h o r t -term screening t e s t s , or i n v i t r o assay systems, c o r r e l a t e w e l l with c a r c i n o g e n i c i t y (McCann and Ames, 1976; C a l k i n s et a l . , 1980), and have the advantage of being even cheaper and q u i c k e r than animal s t u d i e s . However, no i n v i t r o t e s t i s 100 per cent s e n s i t i v e or s p e c i f i c and C a l k i n s et a l . ( l 9 8 0 ) t h e r e f o r e 1 T h i s i s s u e i s addressed somewhat more i r r e v e r e n t l y by two j o u r n a l i s t s quoted by E p s t e i n ( 1 9 7 8 ) , p. 54: "The bottom l i n e on c a r c i n o g e n e s i s t e s t i n g i s t h i s . You .can drown an animal i n a pool of some substance, s u f f o c a t e an animal under a heap of i t , or beat an animal to death with a sock f u l l of i t , but i f i t i s n ' t c a r c i n o g e n i c , you can't g i v e an animal cancer with i t . " 9 recommend i n v i t r o t e s t s as s c r e e n i n g t e s t s only, most u s e f u l f o r e s t a b l i s h i n g p r i o r i t i e s f o r animal and/or e p i d e m i o l o g i c a l t e s t i n g . I t can be seen from the above d i s c u s s i o n that the l i m i t a t i o n s of epidemiology and i n v i v o / i n v i t r o t e s t i n g are to a l a r g e extent complementary. Epidemiology has the s t r e n g t h of d e a l i n g with human s u b j e c t s ; i t s weaknesses are the ( u s u a l l y ) long time p e r i o d s r e q u i r e d to see r e s u l t s ( e f f e c t s ) , r e l a t i v e l y h igh c o s t s f o r p r e c i s e work and the d i f f i c u l t y i n completely i s o l a t i n g v a r i a b l e s . The i n v i v o / i n v i t r o s t u d i e s are low cost and quick i n comparison and can r e a d i l y i s o l a t e v a r i a b l e s and dose l e v e l s . However, e x t r a p o l a t i o n of r e s u l t s to humans remains c o n t r o v e r s i a l , p a r t l y due to v a r i a t i o n i n response among sp e c i e s and i n t e r p r e t i n g the s i g n i f i c a n c e of dose l e v e l s . Hazard assessment can o b v i o u s l y take advantage of a l l three approaches, with people working in any of these methods a l e r t i n g c o l l e a g u e s to new f i n d i n g s i n t h e i r own area and using r e s u l t s from other d i s c i p l i n e s to suggest new r e s e a r c h areas i n t h e i r own d i s c i p l i n e . C. EPIDEMIOLOGY: ITS CONCEPTUAL FRAMEWORK AND A CRITIQUE Epidemiology, as a branch of medicine g e n e r a l l y , has t r a d i t i o n a l l y f u n c t i o n e d from the same conc e p t u a l framework, or paradigm, as has c l i n i c a l medicine. M i s h l e r (1981) d e s c r i b e s the c o n c e p t u a l framework as the biomedical model of i l l n e s s . Peterson .(1981) and Chalmers (1982) d e s c r i b e i t as a p o s i t i v i s t t h e o r e t i c a l approach. 10 M i s h l e r (1981) s t a t e s there ar four assumptions inherent i n the biomedical model: i . the d e f i n i t i o n of d i s e a s e as d e v i a t i o n from normal b i o l o g i c a l f u n c t i o n i n g ; i i . the d o c t r i n e of s p e c i f i c e t i o l o g y ( i . e . that each d i s e a s e has a s p e c i f i c pathogenesis and p a t h o l o g y ) ; i i i . the assumption of g e n e r i c d i s e a s e s ( i . e . "that each d i s e a s e has s p e c i f i c and d i s t i n g u i s h i n g f e a t u r e s that are u n i v e r s a l to the human s p e c i e s . That i s , d i s e a s e symptoms and processes are expected to be the same i n d i f f e r e n t h i s t o r i c a l p e r i o d s and i n d i f f e r e n t c u l t u r e s and s o c i e t i e s . " ) i v . the s c i e n t i f i c n e u t r a l i t y of medicine ( i . e . that medicine "has adopted not only the r a t i o n a l i t y of the s c i e n t i f i c method but the concomitant val u e s of the s c i e n t i s t , namely, o b j e c t i v i t y and n e u t r a l i t y . ... the i m p l i c a t i o n [ i s ] t h a t the work ... i s guided p r i m a r i l y by ' o b j e c t i v e ' s c i e n t i f i c r u l e s and c r i t e r i a and t h e r e f o r e i s r e l a t i v e l y u n a f f e c t e d by wider s o c i a l , c u l t u r a l , and p o l i t i c a l f o r c e s . " ) ( q u o t a t i o n s from M i s h l e r , 1981) Epidemiology r e l i e s upon t h i s c onceptual framework f o r d e f i n i t i o n of i t s problems, design of s t u d i e s and i n t e r p r e t a t i o n of f i n d i n g s a c c o r d i n g to M i s h l e r . As a r e s u l t , even though 11 epidemiology's i n v e s t i g a t i o n of the h e a l t h of p o p u l a t i o n s and communities c o n t r a s t s with c l i n i c a l medicine's focus on i n d i v i d u a l p a t i e n t s and cure of s p e c i f i c d i s e a s e s , epidemiology i s s e v e r e l y l i m i t e d i n i t s h a n d l i n g of s o c i a l and c u l t u r a l f a c t o r s . They are used " e s s e n t i a l l y as i n d i c a t o r s of s i t u a t i o n s that i n c r e a s e or decrease b i o l o g i c a l r i s k f a c t o r s " ( M i s h l e r , 1981). Although epidemiology's "search f o r s o c i a l c o r r e l a t e s of i l l n e s s f a l l s o u t s i d e the boundaries, or at l e a s t s t r e t c h e s the l i m i t s of the biomedical model", as M i s h l e r s t a t e s , "epidemiology does not o f f e r an a l t e r n a t i v e to the biomedical model e i t h e r i n i t s d e f i n i t i o n of i l l n e s s or i n i t s theory of d i s e a s e c a u s a t i o n . " Both Paterson (1981) and Chalmers (1982) argue that the p o s i t i v i s t approach can l e a d only to " s u p e r f i c i a l " f i n d i n g s , that i s , can d e s c r i b e , but cannot f i n a l l y e x p l a i n the phenomenon under i n v e s t i g a t i o n . The s t r u c t u r a l r e l a t i o n s h i p of f a c t o r s a s s o c i a t e d with d i s e a s e ( i n c l u d i n g d i s e a s e d e f i n i t i o n i t s e l f ) i s not i n v e s t i g a t e d as a c a u s a l f a c t o r , i . e . as an u n d e r l y i n g cause. For example, s o c i a l c l a s s i s not pursued as a p o t e n t i a l cause of d i s e a s e i n and of i t s e l f . Instead, as M i s h l e r has noted, when s o c i a l and c u l t u r a l f a c t o r s are i n c l u d e d as v a r i a b l e s i n e p i d e m i o l o g i c a l i n v e s t i g a t i o n they are used to l o c a t e s p e c i f i c p o p u l a t i o n s at r i s k or to i s o l a t e c e r t a i n d i s e a s e - p r o d u c i n g c o n d i t i o n s , which then permits more d i r e c t t e s t s of b i o l o g i c a l l y grounded e t i o l o g i c a l hypotheses. M i s h l e r o f f e r s " c o n s t r u c t i v i s m " or " s o c i a l c o n s t r u c t i v i s m " as an a l t e r n a t i v e model. He d e s c r i b e s t h i s t h e o r e t i c a l framework as a 1 2 major t r a d i t i o n of s o c i o l o g i c a l thought, proposing that " r e a l i t y i s c o n s t r u c t e d through human a c t i o n , and does not e x i s t independently of i t . ... the world as a meaningful (emphasis i n o r i g i n a l ) r e a l i t y i s c o n s t r u c t e d through human i n t e r p r e t i v e a c t i v i t y . " The s i g n i f i c a n c e of t h i s approach f o r e p i d e m i o l o g i c a l i n v e s t i g a t i o n i s s t a t e d by M i s h l e r as f o l l o w s : ... The work of p h y s i c i a n s and other h e a l t h p r o f e s s i o n a l s i s understood as i n t e g r a l to the d e f i n i t i o n and d i a g n o s i s of d i s e a s e , and hence i n i t s p r o d u c t i o n . ... t h e i r b e l i e f s and p r a c t i c e s with regard to d i a g n o s i s and treatment are t o p i c s of . i n q u i r y and r e q u i r e f u r t h e r a n a l y s i s and i n t e r p r e t a t i o n . T h e r e f o r e , the focus of i n v e s t i g a t i o n s h i f t s from p a t i e n t s ' symptoms as c r i t e r i a f o r the d i a g n o s i s ... to the ways i n which such c r i t e r i a are a p p l i e d , to i n s t i t u t i o n a l f a c t o r s that a f f e c t c l i n i c a l p r a c t i c e ... and to broader s o c i o - c u l t u r a l f o r c e s and values t h a t i n f l u e n c e the c h o i c e and use of p a r t i c u l a r c r i t e r i a . " ( M i s h l e r , 1981. p. 163) Chalmers (1982) l i m i t s h i s d i s c u s s i o n of a l t e r n a t i v e s to p o s i t i v i s m i n epidemiology to a c a l l f o r a s c i e n t i f i c r e v o l u t i o n ( i n a Kuhnian sense, that i s a s i g n i f i c a n t s h i f t i n the dominant paradigm, or conceptual framework. 1 ). Chalmers proposes that such a r e v o l u t i o n might c o n s i s t of a s h i f t from the concept of i n d i v i d u a l i s m ( i . e . i n d i v i d u a l s as f r e e agents, choosing l i f e s t y l e s , making d e c i s i o n s about s o c i a l i n s t i t u t i o n s , e t c . ) which "permeates the modern con c e p t i o n of the s o c i a l world" to a concept of c l a s s as a l e v e l of a n a l y s i s i n epidemiology. 1 See Kuhn, T.S. The S t r u c t u r e of S c i e n t i f i c R e v o l u t i o n s , Chicago: U n i v e r s i t y of Chicago Press, 1970. 13 The i m p l i c a t i o n s of t r a d i t i o n a l epidemiology's r e l i a n c e upon the p o s t i v i s t / b i o m e d i c a l paradigm are, a c c o r d i n g to M i s h l e r , that the s o c i a l contexts of p a t i e n t s and t h e i r i l l n e s s e s have been n e g l e c t e d , with the r e s u l t that s o c i a l meanings of i l l n e s s go unaddressed by the b i o l o g i c a l s c i e n c e s . T h i s i n turn r e s u l t s i n a l i m i t a t i o n i n both the understanding and treatment of d i s e a s e by medical p r a c t i t i o n e r s . He argues that when i l l n e s s i s seen as s o c i a l l y produced, a wider range of i n f o r m a t i o n and i n t e r e s t s must be taken i n t o account than i s r e q u i r e d by the b i o m e d i c a l model. He s t a t e s that although t h i s can be seen as a t h r e a t to medical a u t h o r i t y and the s t a t u s and power that are the accompaniments of medical dominance, i t a l s o i m p l i e s that p a t i e n t s and others are p o t e n t i a l a l l i e s of p h y s i c i a n s i n a f f e c t i n g the process of l a b e l l i n g , d i a g n o s i s , management and treatment of i l l n e s s and t h e r e f o r e i n p r o v i d i n g more humane and s o c i a l l y responsive c a r e . He suggests t h a t , given a l a r g e r conceptual framework, c l i n i c a l p r a c t i c e c o u l d be r e t u r n e d to i t s s o c i a l context, t u r n i n g away from the m e d i c a l i z a t i o n of l i f e and towards the r e s o c i a l i z a t i o n of medicine. (A more extended d i s c u s s i o n appears i n Appendix A.) D. OCCUPATIONAL INJURY AND DISEASE AS A SOCIAL ISSUE The 1970's have seen i n c r e a s i n g p u b l i c concern about the r a t e s of i n j u r y and d i s e a s e a t t r i b u t a b l e to the workplace. Manga et a l . (1981) r e p o r t that more than one m i l l i o n cases of o c c u p a t i o n a l d i s e a s e , i n j u r y or f a t a l i t y are r e p o r t e d a n n u a l l y to Canadian workers' compensation boards. Compensation c o s t s 1 4 t o t a l l e d n e a r l y one b i l l i o n d o l l a r s i n Canada i n 1978, not i n c l u d i n g i n d i r e c t c o s t s to employers (e.g. work d i s r u p t i o n , damage, replacement h i r i n g and t r a i n i n g , drop i n worker morale and p o s s i b l e l e g a l fees) and the i n j u r e d worker and h i s / h e r f a m i l y (e.g. l o s s of f u l l pay, l o s s of s e l f - e s t e e m , p a i n and s u f f e r i n g , i n c l u d i n g f a m i l y s t r e s s , sometimes c u l m i n a t i n g i n m a r i t a l and f a m i l y breakdown, with the p o t e n t i a l f o r s o c i a l w e l f a r e c o s t s r e s u l t i n g ) . Educated guesses of the hidden c o s t s of o c c u p a t i o n a l i n j u r y and d i s e a s e range from 3.5 to 5 times d i r e c t c o s t s (Manga et a l . , 1 9 8 1 ) . O c c u p a t i o n a l d i s e a s e (as d i s t i n c t from i n j u r y ) c l a i m s are the small m i n o r i t y of a l l c l a i m s made to workers' compensation systems. 1 I t i s argued that compensation records may s e r i o u s l y underreport o c c u p a t i o n a l d i s e a s e i n p a r t i c u l a r , p r i m a r i l y due to the g e n e r a l l y long l a t e n c y p e r i o d s , lower l i k l i h o o d (than o c c u p a t i o n a l i n j u r y ) t h a t the worker, the employer or medical personnel w i l l connect the d i s e a s e outcome with a workplace exposure, and high workforce m o b i l i t y . Cancers o r i g i n a t i n g from workplace exposures generate perhaps the s t r o n g e s t p u b l i c concern. T h i s may p a r t l y be due to the r o l e of cancer i n contemporary s o c i a l mythology (see Sontag, 1978) but i s a l s o due to s o c i a l j u s t i c e i s s u e s a s s o c i a t e d with 1 A s h f o r d (1976) c i t e s U.S. Bureau of S t a t i s t i c s f i g u r e s , 1971-2, of d i s e a s e c l a i m s as f i v e percent of t o t a l c l a i m s . Ison (1978), i n v e s t i g a t i n g three p r o v i n c i a l compensation boards i n Canada, r e p o r t s o c c u p a t i o n a l d i s e a s e c l a i m s ( e x c l u d i n g l o s s of hearing) were only 0.8 to 1.7 percent of permanent d i s a b i l i t y awards i n 1 976. 15 o c c u p a t i o n a l d i s e a s e . For example, d i s e a s e s of an o c c u p a t i o n a l o r i g i n are not evenly shared by everyone i n s o c i e t y , or even by a l l p a i d workers. A l s o , e s t a b l i s h i n g exposure l e v e l s , and t h e r e f o r e the l e v e l of r i s k of d i s e a s e i n a p a r t i c u l a r workplace, i s not w i t h i n the c o n t r o l of the workers at r i s k . Higginson (1976) p o i n t s out that although people may accept high l e v e l s of r i s k i n a c t i v i t i e s i n t h e i r p r i v a t e l i v e s (e.g. smoking, p a r a c h u t i n g , mountain c l i m b i n g ) , most people "demand a much higher degree of s a f e t y f o r r i s k s o u t s i d e t h e i r c o n t r o l " . Estimates of the p r o p o r t i o n of a l l cancers caused by o c c u p a t i o n a l exposures i s g e n e r a l l y between one and ten percent (Higginson,1976; Wynder and G o r i , l 9 7 7 ; Doll,1977) but ranges to at l e a s t twenty percent (U.S. N a t i o n a l Cancer I n s t i t u t e , 1978 1 ). Cancers of an o c c u p a t i o n a l o r i g i n are accorded an importance beyond t h e i r numbers by s c i e n t i s t s as w e l l as the p u b l i c p a r t l y because of the s o c i a l j u s t i c e i s s u e s mentioned above, and p a r t l y because i n d u s t r i a l chemicals o f t e n move i n t o the g e n e r a l environment, i n t e n t i o n a l l y or u n i n t e n t i o n a l l y , r e s u l t i n g i n exposure of p o t e n t i a l l y very l a r g e p o p u l a t i o n s . These hazards to the p u b l i c which are generated by f i r m s , but which are not p a r t of p r o d u c t i o n c o s t s , are known as an e x t e r n a l i t i e s f a c t o r i n market f a i l u r e . Although exposures i n the g e n e r a l environment may be much l e s s than i n d u s t r i a l exposures, R i c h a r d " N a t i o n a l Cancer Institute/NIEHS D r a f t Summary Report on the Incidence of Cancer from O c c u p a t i o n a l F a c t o r s " , O c c u p a t i o n a l S a f e t y and H e a l t h Reporter, 8,1978, 1090-1; i n Manga et al.,1981. 16 D o l l (1977) s t a t e s that r i s k s of even minute doses cannot be d i s m i s s e d : ... we can no longer assume that t h r e s h o l d s 1 e x i s t f o r chemical or p h y s i c a l agents and we ought n e i t h e r to ignore nor to condemn them u n t i l we have d e r i v e d q u a n t i t a t i v e r e l a t i o n s h i p s between the dose to which i n d i v i d u a l s are exposed and the r e s u l t a n t i n c i d e n c e of the d i s e a s e . At present we can do t h i s only very c r u d e l y . The importance of o c c u p a t i o n a l d i s e a s e s then i s p a r t l y due to the s i g n a l they o f f e r f o r the i d e n t i f i c a t i o n of hazards as a r e s u l t of the "high r i s k " s i t u a t i o n , and t h e r e f o r e i n t e r v e n t i o n f o r p r e v e n t i o n . Any q u a n t i t a t i v e i n f o r m a t i o n o b t a i n a b l e from i n d u s t r i a l exposures, though not immediately i n t e r p r e t a b l e to lower dosage general environmental exposures, at l e a s t i s a p o t e n t i a l a l e r t . (See Appendix B f o r a f u l l e r d i s c u s s i o n of o c c u p a t i o n a l i n j u r y and d i s e a s e as a s o c i a l i s s u e . ) 1 With res p e c t to t h r e s h o l d s , standards of exposure ( t h r e s h o l d l i m i t values) of l e s s than 500 chemicals have been promulgated i n the USA ( S c h o t t e n f e l d and Haas, 1978). S u l l i v a n and Barlow (1979) s t a t e that "with the p o s s i b l e e x c e p t i o n of i o n i z i n g r a d i a t i o n , there have been no systematic s t u d i e s of the r e l a t i v e s a f e t y of the accepted t h r e s h o l d l i m i t v a l u e s (TLVs) with r e s p e c t to r e p r o d u c t i v e hazards. Where evidence of adverse e f f e c t s on male and female sexual f u n c t i o n or r e p r o d u c t i v e c a p a c i t y does e x i s t , i t has l a r g e l y been ignored i n the s e t t i n g of TLVs." They s t a t e f u r t h e r " I t i s i n t e r e s t i n g t h at TLVs i n the USSR are g e n e r a l l y set at much lower l e v e l s than i n the West s i n c e they are based on minimal b e h a v i o r a l e f f e c t s d e t e c t a b l e i n experimental animals r a t h e r than on more c o n v e n t i o n a l measures of acute t o x i c e f f e c t s . " S u l l i v a n and Barlow (1979) a l s o r e p o r t that a review of Index Medicus 1960-76 turned up 108 papers from East Europe on p o s s i b l e r e p r o d u c t i v e hazards i n the workplace. Only 68 papers on the t o p i c were re p o r t e d from the r e s t of the world. They note that a Russian r e p o r t i n 1967 was the f i r s t to draw a t t e n t i o n to the poor r e p r o d u c t i v e outcomes of female a n e s t h e t i s t s . They s t a t e however that concern over r e p r o d u c t i v e hazards i s now i n c r e a s i n g i n the West. 17 E. RECORD LINKAGE The purpose of t h i s paper i s to address only one aspect of the i n f o r m a t i o n a l inadequacies f a c i n g the o c c u p a t i o n a l h e a l t h e p i d e m i o l o g i s t , that i s the exposure s i d e , v i a employment rec o r d s , of the i n f o r m a t i o n e q u a t i o n . Before examining the s t a t u s of employment records i n one i n d u s t r y ( i n chapter 2), the concept of r e c o r d l i n k a g e and c r i t e r i a f o r c r e a t i o n of o c c u p a t i o n a l nominal r o l l f i l e s , as proposed by the O c c u p a t i o n a l and Environmental Health Research U n i t , S t a t i s t i c s Canada, w i l l be reviewed. The idea of l i n k i n g recorded i n f o r m a t i o n about an i n d i v i d u a l from one p o i n t i n time with recorded i n f o r m a t i o n on the same i n d i v i d u a l from another p o i n t i n time i s the f a i r l y simple concept u n d e r l y i n g r e c o r d l i n k a g e . Record l i n k a g e i s u s u a l l y the term used when r e f e r r i n g to the l i n k i n g of l a r g e numbers of r e c o r d s , u s u a l l y a s s i s t e d by computer technology. Smaller i n c r e a s e s i n r i s k s are d e t e c t a b l e than ever before as a r e s u l t of computer technology's a b i l i t y to l i n k l a r g e numbers of records cheaply and a c c u r a t e l y . Of p a r t i c u l a r s i g n i f i c a n c e i s the a b i l i t y , as Acheson (1979A) d e s c r i b e s , to b r i n g together ... i n f o r m a t i o n about exposure of members of a p o p u l a t i o n to an agent, with i n f o r m a t i o n about the occurence of a d i s e a s e i n that p o p u l a t i o n , even when such events are separated by s u b s t a n t i a l d i s t a n c e s i n time and space. (emphasis in o r i g i n a l ) Newcombe (1979) a t t r i b u t e s the c o i n i n g of the term " r e c o r d l i n k a g e " to Dr. H a l b e r t L. Dunn, c h i e f , U.S. N a t i o n a l O f f i c e of 18 V i t a l S t a t i s t i c s , i n 1946 when speaking to a group of Canadian v i t a l s t a t i s t i c i a n s . Martha Smith (1980) c r e d i t s Dr. H.B. Newcombe1 with the development and a p p l i c a t i o n i n Canada of computer techniques f o r r e c o r d l i n k a g e between the years 1957-1979; t h i s work has subsequently been pursued by S t a t i s t i c s Canada. Newcombe (1979) s t a t e s that the e a r l i e s t s t u d i e s i n Canada were c a r r i e d out using v i t a l s t a t i s t i c s data, showing the f e a s i b i l i t y of computer-aided l i n k a g e . He then s t a t e s that when u n i v e r s a l h o s p i t a l insurance and u n i v e r s a l medical care insurance came i n t o e f f e c t , i t became p o s s i b l e i n p r i n c i p l e to l i n k i l l n e s s i n f o r m a t i o n using s i m i l a r computer-aided l i n k a g e techniques. T h i s he d e s c r i b e s as p r e s e n t i n g more p r a c t i c a l problems than v i t a l s t a t i s t i c s l i n k a g e . L i n k i n g to employment in occupations Newcombe (1979) d e s c r i b e s as i n v o l v i n g " s t i l l g r e a t e r d i f f i c u l t i e s " . By d e f i n i t i o n , r e c o r d l i n k a g e r e q u i r e s i n d i v i d u a l i d e n t i f y i n g i n f o r m a t i o n f o r both s t a r t i n g - p o i n t (exposure) f i l e s and end-point (outcome) f i l e s . P e r sonal p r i v a c y can be maintained by r e p o r t i n g only grouped data, but i n d i v i d u a l i d e n t i f y i n g i n f o r m a t i o n i s r e q u i r e d i n i t i a l l y . 1 She c i t e s : Newcombe et al.,"Automatic Linkage of V i t a l and H e a l t h Records", Science, 130,954-9,1959; Kennedy et a l . , Computer Records f o r Family Linkage of V i t a l and H e a l t h Records. Chalk River:Atomic Energy of Canada Ltd.,1965; Newcombe, H.B. "Record L i n k i n g : The Design of E f f i c i e n t Systems f o r L i n k i n g Records i n t o I n d i v i d u a l and Family H i s t o r i e s " , Amer. J . of Human G e n e t i c s , j_9, 335-9, 1967; Smith, M.E. and H.B. Newcombe. "Methods f o r Computer L i n k i n g of H o s p i t a l Admission-Separation Records i n t o Cumulative H e a l t h H i s t o r i e s " , Methods of Information i n Medicine, _1_4, 118-25, 1 975. 19 Acheson (1979B) d e s c r i b e s the adoption i n Great B r i t a i n of the techniques of r e c o r d l i n k a g e developed by Newcombe. They • were used i n i t i a l l y i n the 1960's to l i n k v i t a l s t a t i s t i c s and h o s p i t a l a d m i n i s t r a t i o n data i n t o p e r s o n a l cumulative and f a m i l y f i l e s . In England, the N a t i o n a l Cancer R e g i s t e r f i l e s have been subsequently added to the data base. S c o t l a n d has a n a t i o n a l r e c o r d l i n k a g e system a l s o , i n v o l v i n g h o s p i t a l d i s c h a r g e r e c o r d s , death r e c o r d s , cancer r e g i s t r a t i o n r e c o r d s , handicapped c h i l d r e n s ' r e g i s t e r s and records from school h e a l t h exams. These are not h e l d i n a comprehensive manner but are l i n k e d as r e q u i r e d . In Canada, S t a t i s t i c s Canada has organized m o r t a l i t y and cancer i n c i d e n c e records f o r access on a n a t i o n a l s c a l e (Smith, 1981). Though v i t a l events r e g i s t r a t i o n i s a p r o v i n c i a l r e s p o n s i b i l i t y , the S t a t i s t i c s Act of 1918 and Order i n C o u n c i l of 1919 e s t a b l i s h e d mechanisms f o r the uniform r e g i s t r a t i o n of v i t a l events, the t r a n s m i s s i o n of c o p i e s of these records to S t a t i s t i c s Canada and the p u b l i c a t i o n of v i t a l s t a t i s t i c s s t a r t i n g i n 1921 (Rowebottom,1979). Coded cause of death f i l e s are machine readable back to 1950 (Smith,1980). The N a t i o n a l Cancer Incidence Reporting System has been c o m p i l i n g r e p o r t s from p r o v i n c i a l r e g i s t r i e s (except O n t a r i o ) s i n c e 1969. P r o v i n c i a l sources of i n f o r m a t i o n vary but may i n c l u d e cancer c l i n i c r e c o r d s , general h o s p i t a l r e c o r d s , cancer n o t i f i c a t i o n s from i n d i v i d u a l d o c t o r s , n o t a t i o n s of cancer on h o s p i t a l a d m i s s i o n / s e p a r a t i o n h e a l t h insurance forms, medicare c l a i m s , r a d i o l o g y , hematology or c y t o l o g y r e p o r t s (Smith, 1980). 20 O n t a r i o has r e c e n t l y begun to supply cancer i n c i d e n c e i n f o r m a t i o n . Smith (1981) notes that S t a t i s t i c s Canada has p l a c e d an emphasis 'on the o r g a n i z a t i o n of these "outcome" f i l e s , s i n c e the l e g i s l a t i o n surrounding the use of s t a t i s t i c s i n Canada ( S t a t i s t i c s Act) l i m i t s such a c o - o r d i n a t i n g r o l e to the n a t i o n a l body. These outcome data are matched to exposure records r e l a t i n g to a s p e c i f i c i n t e r e s t group (e.g. an o c c u p a t i o n a l group). A f a i r l y s o p h i s t i c a t e d r e c o r d l i n k a g e system i s r e q u i r e d s i n c e Canadians do not have unique l i f e t i m e i d e n t i f i e r s , and t h e r e f o r e the r e c o r d l i n k a g e system u t i l i z e s a number of i d e n t i f y i n g items (e.g. name, sex, b i r t h d a t e , b i r t h p l a c e , parents' names, e t c . See a l s o Table I) common to v a r i o u s r e c o r d . s e t s to determine whether or not they r e f e r to the same i n d i v i d u a l . T e s t s of t h i s computer l i n k a g e program using i l l - h e a l t h records and b i r t h r e g i s t r a t i o n s have demonstrated i t to be more s u c c e s s f u l than manual l i n k i n g i n a c c u r a t e l y matching records (98.3 versus 96.7 per cent i n one stu d y ) , with fewer f a l s e l i n k a g e s (0.1 versus 2.3 per cent) (Smith, 1981). Human e r r o r s r e s u l t mainly from incomplete s e a r c h i n g , e r r o r s i n copying and inadequacy of i d e n t i f y i n g i n f o r m a t i o n . Computer e r r o r s r e s u l t "almost e n t i r e l y " from i n s u f f i c i e n t or d i s c r e p a n t i d e n t i f y i n g i n f o r m a t i o n , and g e n e r a l l y r e s u l t i n f a i l u r e to f i n d a c o r r e c t l i n k a g e r a t h e r than g e n e r a t i n g a f a l s e l i n k a g e (Smith, 1980). Costs of a search are i n the area of one to two d o l l a r s per re c o r d i n the cohort, with l a r g e r c o h o r t s r e s u l t i n g i n lower 21 c o s t per r e c o r d (Smith, 1981). St u d i e s u s i n g these f a c i l i t i e s have been undertaken to e v a l u a t e long-term consequences of o c c u p a t i o n a l exposures, medical treatments and d i a g n o s t i c procedures and other circumstances ( n u t r i t i o n , age at f i r s t b i r t h ) . O c c u p a t i o n a l s t u d i e s i n c l u d e uranium miners, n i c k e l workers, hard rock miners, r a d i a t i o n workers, as w e l l as workers exposed to asbestos, f i b r e g l a s s , v i n y l c h l o r i d e and formaldehyde vapour (Smith, 1981). Accurate l i n k a g e of exposure records to outcome records i s enhanced by p r o v i s i o n of thorough i n f o r m a t i o n i n the exposure r e c o r d s . Smith's recommended l i s t of o p t i m a l p e r s o n a l i d e n t i f y i n g i n f o r m a t i o n appears i n Table 1 (Smith, 1981). Smith (1981) recommends that t h i s i n f o r m a t i o n be c o l l e c t e d from employees a f t e r h i r e 1 as a r o u t i n e personnel p r a c t i c e ; updated i n f o r m a t i o n on m a r i t a l s t a t u s , p l a c e of r e s i d e n c e , as w e l l as t e r m i n a t i o n dates, date and p l a c e of death i f occurred and known, should be added as they occur. In a d d i t i o n , work and exposure h i s t o r i e s should be maintained (e.g. jobs h e l d , nature and measure of exposure to p o t e n t i a l hazard p r e s e n t ) . Elsewhere, Smith recommends i n c l u s i o n of e t h n i c o r i g i n i n exposure records (Smith, 1980). I t i s i n t e r e s t i n g to note that 1 Since i t i s a v i o l a t i o n of p r o v i n c i a l and f e d e r a l Human Rights l e g i s l a t i o n to use some kinds, of p e r s o n a l i d e n t i f y i n g i n f o r m a t i o n i n employment d e c i s i o n s (e.g. p l a c e of b i r t h , age, sex, m a r i t a l s t a t u s , race, r e l i g i o n ) the employer i s both being l a w f u l ( n o n - d i s c r i m i n a t o r y ) and i s seen to be l a w f u l by simply not o b t a i n i n g p e r s o n a l i n f o r m a t i o n i r r e l e v a n t to the employment d e c i s i o n (that i s , not s p e c i f i c a l l y r e l a t e d to a b i l i t y t o perform the job) u n t i l a f t e r the i n d i v i d u a l i s h i r e d . 2 2 the s o c i a l insurance number (SIN) and h e a l t h insurance number are not used i n the m o r t a l i t y r e c o r d search, s i n c e they do not appear on death c e r t i f i c a t e s . However, they are u s e f u l i f other i d e n t i f y i n g items are l i m i t e d , p a r t i c u l a r l y s i n c e s o c i a l insurance f i l e s can be accessed f o r b i r t h date, f i r s t and second given name, and mother's maiden name ( f o r males and s i n g l e females) or own maiden name ( f o r a l l married females, i n c l u d i n g separated, d i v o r c e d and widowed). Access to these f i l e s r e q u i r e s the c o l l a b o r a t i o n however of the Canada Employment and Immigration Commission (CEIC) (Smith, 1980). In a d d i t i o n , i n c l u s i o n of s o c i a l insurance number i n the exposure r e c o r d permits f a i r l y simple removal of d u p l i c a t e e n t r i e s i n the exposure r e c o r d as w e l l as permits, again with the c o l l a b o r a t i o n of CEIC, the c o m p i l a t i o n of work h i s t o r i e s i n v o l v i n g more than one employer. S t a t i s t i c s Canada p r o t e c t s the c o n f i d e n t i a l i t y of i n d i v i d u a l s ' records by r e l e a s i n g s t a t i s t i c a l i n f o r m a t i o n r e s u l t i n g from r e c o r d l i n k a g e only i n formats which do not permit i d e n t i f i c a t i o n of i n d i v i d u a l s ( f o r a f u r t h e r d i s c u s s i o n of c o n f i d e n t i a l i t y , see chapter I I I ) . These c r i t e r i a f o r exposure records w i l l now be used to ass e s s , i n a case study model, the adequacy of records on employees/members between 1940 and the present h e l d by a group of employers and a trade union. 2 3 Table I - L i s t of Items to be Included i n an Employee H e a l t h - i d e n t i f y i n g Q u e s t i o n n a i r e 1. Surname 2. Previous surname (if any) 3. First given name 4. Second and other given names 5. Usual name (or nickname) 6. Sex 7. Birth date (year, month, day) 8. Birth province or country 9. Birth city or place 10. Father's surname 11. Father's first given name 12. Father's second given name 13. Father's birth province or country 14. Mother's maiden surname 15. Mother's first given name 16. Mother's second given name 17. Mother's birth province or country 18. Marital status 19. Spouse's birth surname 20. Spouse's first given name 21. Spouse's second given name 22. Spouse's birth province or country 23. Social Insurance Number 24. Health Insurance Number 25. Pension plan number 26. Current complete address including postal code Signature: Date: :  Year Month Day This form is designed to be filled out when the employee is hired. Other information relating to work histories, exposure histories, and updates should be added later. A control code to indicate the work site, a control code digit to indicate alternative entries for the same event (e.g., cases where an individual may have an alternate spelling for surname), and a unique employee number arc optional additional items. Termination dates and address changes should be added. A "last known alive date" is of value to reduce the amount of searching required in the death file. If the employee dies, the date of death and province or country of death should be added to the nominal roll file. From Smith,1981. Reprinted with permission of the author. 2 4 I I . NOMINAL ROLL DATA BASE CASE STUDY A. INTRODUCTION The p r a c t i c a l i t y of e p i d e m i o l o g i c a l r e s e a r c h has been ai d e d s i g n i f i c a n t l y by the development of m i c r o e l e c t r o n i c technology. L o c a t i n g and matching any l a r g e number of outcome records (e.g. death r e g i s t r a t i o n s ) with exposure r e c o r d s , at one time unthinkable f o r the amount of human c l e r i c a l labour i t would r e q u i r e , i s now p o s s i b l e , cheap and a c c u r a t e . However, the e f f e c t i v e n e s s of t h i s work depends to a l a r g e extent on the " q u a l i t y , q u a n t i t y and d i s c r i m i n a t i n g power of items of p e r s o n a l i d e n t i f y i n g i n f o r m a t i o n present on the exposure f i l e that o v e r l a p with those a v a i l a b l e i n the [outcome] f i l e . " (Smith,1982). S t a t i s t i c s Canada has been i n v o l v e d i n the o r g a n i z a t i o n of 'outcome' i . e . m o r t a l i t y data base f i l e s and N a t i o n a l Cancer Incidence R e p o r t i n g System f i l e s f o r the Canadian p o p u l a t i o n ; exposure f i l e s are assembled by o u t s i d e o r g a n i z a t i o n s which are submitted and l i n k e d to outcome f i l e s . What q u a l i t y of exposure records can be expected i n i n d u s t r y ? T h i s chapter w i l l r e p o r t as a case study the s t a t u s of employment records h e l d by major employers in the c o a s t a l lumber i n d u s t r y i n the p e r i o d 1940-81 i n an attempt to throw some l i g h t on t h i s q u e s t i o n . 25 B. THE CASE STUDY AS A RESEARCH METHOD The case study i s the most humble of r e s e a r c h methods. I t i s undertaken as an i n i t i a l , e x p l o r a t o r y step i n what w i l l sometimes be a more extended r e s e a r c h process ( S e l l i t z , et al.,1976; Verhanick and Seaman, 1978). The case study as a r e s e a r c h method i s g e n e r a l l y d i s c u s s e d i n the context of f o r m u l a t i v e or e x p l o r a t o r y r e s e a r c h whose f u n c t i o n s can i n c l u d e c l a r i f y i n g concepts, i n c r e a s i n g the i n v e s t i g a t o r s ' f a m i l i a r i t y with the phenomenon i n q u e s t i o n and g a t h e r i n g i n f o r m a t i o n about the p r a c t i c a l p o s s i b i l i t i e s f o r c a r r y i n g out r e s e a r c h i n r e a l l i f e s e t t i n g s ( S e l l i t z et al.,1976). T h i s case study i n v o l v e d at l e a s t those, f u n c t i o n s . I t was c a r r i e d out to a s s i s t i n e v a l u a t i n g the p o s s i b i l i t i e s and p r a c t i c a l i t i e s of continued r e s e a r c h on the chlorophenate problem i n t h i s i n d u s t r y . I t a l s o had the f u n c t i o n of f a m i l i a r i z i n g the i n v e s t i g a t o r s with the i s s u e s and problems of q u a l i t y of and access to records i n t h i s i n d u s t r y as a p o s s i b l e sample of the s i t u a t i o n i n s i m i l a r l y o rganized i n d u s t r i e s i n the p r o v i n c e . The major s t r e n g t h and weakness of the case study approach are both r e l a t e d to the small sample s i z e . When stu d y i n g only one i n d u s t r y , f a i r l y in-depth i n f o r m a t i o n can be obtained, and examined i n t h e i r n a t u r a l s e t t i n g . V i s i t s can be made to a c t u a l w o r k s i t e s and o f f i c e s , i n d i v i d u a l s who maintain the records systems, perhaps f o r as long as 20-40 years, can be i n t e r v i e w e d , and the a c t u a l q u a l i t y of c a t a l o g u i n g and storage can be assessed. T h i s l e v e l of d e t a i l may have p r a c t i c a l i m p l i c a t i o n s 26 f o r the q u a l i t y and c o s t of any f u t u r e a c t i v i t i e s which w i l l have to o b t a i n and use those r e c o r d s . R e c i p r o c a l l y , the major weakness i n the case study i s the l a c k of g e n e r a l i z a b i l i t y of. the f i n d i n g s of a sample of one. There i s no b a s i s on which to say the B.C. c o a s t a l lumber i n d u s t r y i s t y p i c a l of B.C. employers and unions i n g e n e r a l , or even primary and secondary i n d u s t r y i n g e n e r a l . The i n v e s t i g a t o r s and the reader are l e f t to assess the u s e f u l n e s s of the d e s c r i p t i o n of records i n t h i s i n d u s t r y f o r a n t i c i p a t i n g the q u a l i t y and a c c e s s i b i l i t y of records i n other p l a c e s of employment. An a d d i t i o n a l weakness of case s t u d i e s noted by H i l l w a y (1956) i s an element of s u b j e c t i v i t y . T h i s may be l e s s l i k e l y i n other more s t r u c t u r e d designs and of course may i n f l u e n c e the v a l i d i t y of r e s u l t s . Advantages of the case study design i n a d d i t o n to the depth of i n f o r m a t i o n u s u a l l y obtained are the g e n e r a l l y low c o s t , g r e a t e r ease of g e t t i n g c o - o p e r a t i o n due to the i n f o r m a l i t y and f l e x i b i l i t y , and the avoidance of a r t i f i c i a l i t y which might r e s u l t from more s t r u c t u r e d approaches to the q u e s t i o n (e.g. a mail-out survey) (Abdellah and L e v i n e , 1965). With these concerns i n mind, the r e p o r t of the case study can now be presented. 27 C. CASE STUDY In the s p r i n g of 1981, the F o r e s t Industry I n d u s t r i a l H e a l t h Research Program (FIIRHP) decided to begin the assessment of h e a l t h impacts of chlorophenates (CPs), chemicals used i n the B.C. c o a s t a l lumber i n d u s t r y f o r p r o t e c t i o n of lumber from sap s t a i n and mould s i n c e the l a t e 1930's and 1940's. In 1977 an estimated 55% of the 12.038 b i l l i o n board f e e t of lumber produced i n B.C. was t r e a t e d with chlorophenates (Canada,1981). A j o i n t union-management committee undertook to e x p l o r e the h e a l t h concerns r e l a t e d to exposure to chlorophenates. Dr. T.W. Anderson, Head of the Department of H e a l t h Care and Epidemiology, F a c u l t y of Medicine, UBC, was approached and agreed, with the a s s i s t a n c e of the present w r i t e r and Dr. Donald Enarson of the Department of Medicine, UBC, and with the support of a r e s e a r c h grant from FIIRHP, to determine a v a i l a b i l i t y of i n f o r m a t i o n on the c u r r e n t and h i s t o r i c a l working p o p u l a t i o n exposed or p o t e n t i a l l y exposed to chlorophenates, the q u a l i t y of i n f o r m a t i o n on that p o p u l a t i o n , to review e x i s t i n g l i t e r a t u r e on CPs, and r e p o r t on the f e a s i b i l i t y of a range of h e a l t h s t u d i e s . The Chlorophenate F e a s i b i l i t y Study, as i t came to be known, was s u p e r v i s e d by a j o i n t I n t e r n a t i o n a l Woodworkers of America (IWA)-Counci1 of F o r e s t I n d u s t r i e s (COFI) committee, whose task was to e s t a b l i s h the o b j e c t i v e s of the study, f a c i l i t a t e i n v e s t i g a t o r s ' access to i n f o r m a t i o n , assure i n t e g r a t i o n of the work of the CP f e a s i b i l i t y study team with the CP h e a l t h study a l r e a d y underway i n Port A l b e r n i (IWA) L o c a l 1-85, and l i a s e with the FIIRHP s t e e r i n g committee. 28 The Pulp and Paper Workers of Canada (PPWC) and the Canadian Paperworkers Union (CPU) represent workers at some sawmills on the B.C. c o a s t . N e i t h e r of these unions was represented on the FIIRHP committee i n i t i a t i n g and s u p e r v i s i n g the chlorophenate f e a s i b i l i t y study f o r reasons unknown to t h i s w r i t e r , but lack of i n t e r e s t or concern i s not thought to be one of them. T h i s r e s u l t e d i n no CPU or PPWC o f f i c e s being v i s i t e d , nor were m i l l s organized by those unions v i s i t e d , nor was any inf o r m a t i o n c o l l e c t e d from members of those unions. As of January 1,1982, CPU membership was 7600, PPWC was 7150 and IWA was 42,000 ( B r i t i s h Columbia, 1982). Six of the e i g h t c o a s t a l B.C. IWA l o c a l s were v i s i t e d and telephone i n t e r v i e w s were conducted with the remaining two. Ten head o f f i c e s of the s i x t e e n companies i n v o l v e d were v i s i t e d as w e l l as seven of the t h i r t y - o n e c o a s t a l sawmills operated by those companies. V i s i t s to union l o c a l s c o n s i s t e d of i n t e r v i e w s r e g a r d i n g the nature of records kept on c u r r e n t and past union members, h e a l t h concerns r e l a t e d to CPs and i d e n t i f i c a t i o n of wor k s i t e s represented by the union l o c a l known to use CPs i n a n t i - s t a i n treatment. V i s i t s to m i l l s i t e s i n v o l v e d t o u r s of the a n t i - s t a i n treatment areas with a union and management r e p r e s e n t a t i v e , and i n t e r v i e w s with s u p e r v i s o r s and a d m i n i s t r a t i v e s t a f f i n pe r s o n n e l , p a y r o l l , q u a l i t y c o n t r o l and/or p r o d u c t i o n regarding the p l a n t h i s t o r y of a n t i - s t a i n treatment, h e a l t h concerns, and nature of records on c u r r e n t and past employees. At MacMillan B l o e d e l s i t e s , a meeting was h e l d with union-management h e a l t h and s a f e t y committees. 29 The remaining companies and s i t e s were c o n t a c t e d by telephone. T h i s was n e c e s s i t a t e d because the i n d u s t r y went on s t r i k e i n mid-July, the con t a c t i n f o r m a t i o n f o r companies other than MacMillan B l o e d e l was not r e c e i v e d u n t i l June 15, 1981, and the goal f o r pro d u c t i o n of the f e a s i b i l i t y study r e p o r t was mid-August. However, f o r the most p a r t , the q u a l i t y of i n f o r m a t i o n gathered through telephone i n t e r v i e w s was b e t t e r than might have been expected because of the f a m i l i a r i t y with the t e c h n o l o g i c a l and personnel s i d e of the i n d u s t r y e s t a b l i s h e d through the f a i r l y c a r e f u l s i t e v i s i t s i n e a r l y J u l y and the c i r c u l a t i o n of the f e a s i b i l i t y study summary o u t l i n e to s i t e managers p r i o r to telephone c o n t a c t . What was l o s t was i n f o r m a t i o n of union h e a l t h and s a f e t y r e p r e s e n t a t i v e s at s i t e s not v i s i t e d about h e a l t h concerns or s p e c i f i c exposure concerns p a r t i c u l a r to each s i t e . Current workforce p o p u l a t i o n f i g u r e s were c o l l e c t e d -from m i l l managers, union l o c a l s and the Vancouver F o r e s t D i s t r i c t , B.C. M i n i s t r y of F o r e s t s , m i l l l i s t f o r 1979. H i s t o r i c a l data f o r the p o p u l a t i o n of i n d i v i d u a l m i l l s was d i f f i c u l t to o b t a i n . Company in f o r m a t i o n was u s u a l l y a rough estimate based on r e c o l l e c t i o n o f i n d i v i d u a l l o n g - s e r v i c e s t a f f . However, the Vancouver F o r e s t D i s t r i c t , B.C. M i n i s t r y of F o r e s t s , maintains a m i l l l i s t , updated a n n u a l l y , g i v i n g employment and pr o d u c t i o n f i g u r e s f o r each s i t e ; these d e t a i l e d records were not, r e t a i n e d p r i o r to 1976. As a r e s u l t , best e stimates of t o t a l m i l l p o p u l a t i o n s were obtained from Vancouver F o r e s t D i s t r i c t annual r e p o r t s , where t o t a l sawmill/planer 30 employment i n the d i s t r i c t i s r e p o r t e d f o r most y e a r s . These r e p o r t s show that the t o t a l number of workers has ranged from approximately 12,000 to 19,000 each year from 1944 to 1979; i n 1979, t o t a l workers in the d i s t r i c t were given as 18,107. (Note: the Vancouver F o r e s t D i s t r i c t i n c l u d e s a l l 31 m i l l s i d e n t i f i e d by company r e p r e s e n t a t i v e s on the FIIRHP committee as r e l e v a n t i . e . using c h l o r o p h e n a t e s ) . F o r e s t d i s t r i c t e stimates f o r 29 of the 31 m i l l s i d e n t i f i e d account f o r about 55% of the t o t a l d i s t r i c t m i l l employment. Company f i g u r e s of employment f o r the 31 s i t e s accounts f o r about 49% of the t o t a l d i s t r i c t m i l l employment f i g u r e . I n c l u s i o n of the three woodroom p o p u l a t i o n s known to be exposed to CPs would b r i n g the p r o p o r t i o n of t o t a l workers i n c l u d e d to about 60%, i . e . between 7,200 and 11,400. D. RECORDS 1. Union Records IWA membership records are h e l d at l o c a l union o f f i c e s . S i m i l a r records are h e l d i n a l l o f f i c e s v i s i t e d . A membership r e g i s t r a t i o n c a r d ( o r i g i n a l sign-up card) shows name, address, i n i t i a t i o n date, p l a c e of employment and s o c i a l insurance number (SIN). The dues c a r d holds the same i n f o r m a t i o n p l u s a number showing which c a r d i n the s e r i e s the p a r t i c u l a r c a r d i s . Monthly payments are recorded. Some dues cards i d e n t i f y a death fund b e n e f i c i a r y (at l e a s t three l o c a l s have a death b e n e f i t fund). The only work r e l a t e d i n f o r m a t i o n h e l d i s p l a c e of 31 employment; no d e t a i l e d job i n f o r m a t i o n i s h e l d . A l l l o c a l s appear to have complete s e t s of c u r r e n t and terminated members' cards back to 1948 or 1950 1 . A c t i v e members are c r o s s - i n d e x e d by name and pl a c e of employment; i n a c t i v e members are u s u a l l y f i l e d a l p h a b e t i c a l l y . At l e a s t three l o c a l s have death b e n e f i t fund r e g i s t r a t i o n c a r d s , but they are g e n e r a l l y not r e t a i n e d f o r terminated members. The only i n f o r m a t i o n beyond that h e l d on the dues cards i s name and address of the b e n e f i c i a r y . Two l o c a l s r e p o r t e d r e t a i n i n g a l i s t of i n d i v i d u a l s f o r whom death b e n e f i t payouts had been made; one has records only s i n c e 1971; the other advised that records p r i o r t o 1971 were d i f f i c u l t to acc e s s . Cause of death, i f known, i s not a formal p a r t of the r e c o r d . S e n i o r i t y l i s t s f o r each o p e r a t i o n organized w i t h i n the l o c a l are h e l d f o r the c u r r e n t year, but a v a i l a b i l i t y of h i s t o r i c a l l i s t s i s patchy. Nowhere was i t c e r t a i n that complete s e t s were r e t a i n e d , although at some l o c a l s there are some l i s t s d a t i n g back to the 1950's. A l i s t of people ever working at m i l l s u sing CPs from union records c o u l d be generated, back to 1948 or 1950. A l p h a b e t i c a l f i l e s of terminated members would have to be reviewed and i n d i v i d u a l s recorded who were shown to be employed at r e l e v a n t m i l l s i n r e l e v a n t years. D u r a t i o n of employment i s r e t r i e v a b l e , along with SIN, l a s t known address and any b e n e f i c i a r y 1 A l l union r e c o r d s p r i o r to t h i s time were destroyed as a r e s u l t of a change i n the p o l i t i c a l l e a d e r s h i p of the union. 32 in f o r m a t i o n h e l d . Death b e n e f i t fund payout data c o u l d be r e t r i e v e d where a v a i l a b l e and used to compare with pension p l a n / h e a l t h and welfare fund payouts where a p p l i c a b l e . 2. Company Records There are two major sources of nominal r o l l i n f o r m a t i o n f o r employees: a) personnel records and b) p a y r o l l r e c o r d s . a. Personnel Records Most o p e r a t i o n s c r e a t e a manila f i l e and some kind of c a r d r e c o r d on each employee. A few a l s o c r e a t e a s k i l l s i n v e n t o r y and/or t r a i n i n g program r e c o r d which l i s t s each employee. Pe r s o n a l i n f o r m a t i o n i s u s u a l l y recorded i n the m a n i l l a f i l e and on the c a r d , i n c l u d i n g name, address, phone, s o c i a l insurance number. Sometimes h e l d a r e : date of b i r t h , p r e v i o u s employer, h i r e date, j o b ( s ) h e l d , height and weight, m a r i t a l s t a t u s , next of k i n , n a t i o n a l i t y , e d u c a t i o n , dependents, employee number. Older forms and cards (1940's) tend to h o l d more pe r s o n a l i n f o r m a t i o n than recent ones. Termination date i s u s u a l l y recorded f o r terminated employees. Eighteen s i t e s (of 29 interviewed) r e p o r t e d r e t a i n i n g personnel f i l e s of terminated employees f o r at l e a s t some p e r i o d ; at l e a s t 14 h o l d complete or n e a r l y complete r e c o r d s . Many have personnel cards f o r a longer p e r i o d than f i l e s , and at l e a s t two have c o n s i s t e n t l y r e t a i n e d cards though not f i l e s . A ccurate job h i s t o r i e s are not always recorded, e i t h e r by job 3 3 t r a n s f e r n o t i c e s to f i l e , or e n t r i e s on the c a r d , nor do personnel s t a f f assure t h e i r comprehensiveness where they do e x i s t . However, t h i s i s the best source of h i s t o r i c a l exposure i n f o r m a t i o n i d e n t i f i e d . At l e a s t seventeen s i t e s r e p o r t e d job change i n f o r m a t i o n i s h e l d i n personnel f i l e s or on c a r d systems. b. P a y r o l l Records P a y r o l l r e c o rds are the most f r e q u e n t l y r e t a i n e d r e c o r d s . At l e a s t 19 s i t e s have complete or e x t e n s i v e p a y r o l l r e c o rds and at l e a s t f i v e others have some h i s t o r i c a l p a y r o l l r e c o r d s . Recent p a y r o l l records are u s u a l l y computerized and show date, name, pay r a t e , gross earnings, d e d u c t i o n s . Depending on the o p e r a t i o n , an employee number, hours worked, occupation code, pay r a t e , s e n i o r i t y date, address, s o c i a l insurance number and company d i v i s i o n may a l s o appear. Older r e c o r d s c o n s i s t of p a y r o l l c a r d s , manually maintained, which vary i n the amount of i n f o r m a t i o n they c o n t a i n . Many gi v e a job t i t l e , pay r a t e , address, deductions, date. Some s i t e s have r e t a i n e d only T-4 ( f e d e r a l income tax statement of gross earnings) forms f o r any years beyond the most re c e n t . These show only name, address and gross e a r n i n g s . Generating l i s t s of a l l people ever employed from p a y r o l l r ecords may be f a i r l y easy f o r the past ten years or so, s i n c e most o p e r a t i o n s are u s i n g some kind of computerized r e c o r d s . P r i o r to that the task becomes i n c r e a s i n g l y l a b o u r - i n t e n s i v e , 34 r e q u i r i n g i n many p l a c e s manual review of cards which were made up fo r each employee f o r every two weeks or month. T h i s amounts to a very l a r g e number of c a r d s , most of which w i l l repeat f o r continuous employees but each of which needs to be reviewed to determine i f i t i s an i n d i v i d u a l not yet recorded. The task would be an onerous one but not i m p o s s i b l e . These records are sometimes f i l e d c a r e f u l l y i n l a b e l l e d f i l i n g c a b i n e t s or boxes. In other cases they are simply bundled up and stacked i n cupboards, a t t i c s , basements or o u t b u i l d i n g s . In one or two p l a c e s s e c t i o n s of records have been destroyed a c c i d e n t l y by water or other d i s a s t e r s , and i n a few p l a c e s s e c t i o n s were simply thrown out to make more space. c. Other Records The only other sources of nominal r o l l i n f o r m a t i o n are s o c i a l c l u b or "25 year c l u b " l i s t s and pension l i s t s p r i o r to the 1973 industry-wide p l a n . The q u a l i t y of these records appears to be d i r e c t l y r e l a t e d to the q u a l i t y of h i s t o r i c a l personnel r e c o r d s , and so d i d not appear to be a u s e f u l a l t e r n a t e source f o r i d e n t i f i c a t i o n of ever-employed people. However, at s p e c i f i c s i t e s they may a s s i s t i n checking the r e l i a b i l i t y of l i s t s generated through review of p a y r o l l and/or personnel r e c o r d s . S i m i l i a r l y , workers' compensation c l a i m records and s i c k leave c l a i m r e c o r d s are most f r e q u e n t l y f i l e d i n the i n d i v i d u a l ' s personnel f i l e , and t h e r e f o r e do not o f f e r an a l t e r n a t e source of nominal r o l l i n f o r m a t i o n . In some companies, these records are f i l e d a l p h a b e t i c a l l y i n year and 35 s u b j e c t f i l e s e.g. Workers' Compensation Claims, 1980. They o f f e r no more p e r s o n a l i n f o r m a t i o n than i s a v a i l a b l e from personnel and p a y r o l l r e c o r d s , and are by t h e i r nature not an exhaustive l i s t of ever employed, so are not of importance i n g e n e r a t i n g nominal r o l l i n f o r m a t i o n . E. SECONDARY DATA SOURCES 1. IWA/FOREST INDUSTRY PENSION PLAN The p l a n holds records of a l l IWA members employed with p a r t i c i p a t i n g companies i n Western Canada (1200 worksites) s i n c e 1973. The p l a n records show name of e n r o l l e e , employer by year, address, b i r t h d a t e , union l o c a l and hours worked. There are approximately 53,000 a c t i v e woodworkers i n the plan i n Western Canada, 100,000 names c u r r e n t l y i n the plan and a t o t a l of 200,000 i n d i v i d u a l s ever i n the p l a n (personal communication: Joan D i a z , pension a d m i n i s t r a t o r , IWA r e g i o n a l o f f i c e , August 1981). Next of k i n i n f o r m a t i o n i s h e l d f o r people who are over 55 years and have e n r o l l e d i n a b e n e f i c i a r y o p t i o n , or are c u r r e n t l y r e c e i v i n g a pension. The plan a l s o holds i n f o r m a t i o n on p l a c e of employment p r i o r to 1973 submitted by companies f o r i n d i v i d u a l s employed with them p r i o r to 1973 and s t i l l employed i n 1973, or submitted by i n d i v i d u a l s to s u b s t a n t i a t e pension p l a n c r e d i t s . The pension plan makes no c l a i m to comprehensiveness of work re c o r d s p r i o r to 1973. Job t i t l e i n f o r m a t i o n i s not h e l d i n plan r e c o r d s ; d i v i s i o n where employed 36 and union l o c a l i s the s m a l l e s t breakdown of job r e l a t e d i n f o r m a t i o n . The p l a n holds a f i l e of people who d i e d while r e t i r e d ( s i n c e 1973); i t i s known as " c l a s s 9" and i n c l u d e s 1963 f i l e s as of May 31, 1981. A l s o i n t h i s f i l e are people who d i e d while employed i f the plan was a d v i s e d of the death by the company. Deaths may not be completely accurate f o r three reasons: i ) the pension plan has two computer systems, one which generates cheques and one which maintains r e c o r d s . Mr. Norman, plan a d m i n i s t r a t o r , s t a t e d (August,1981) that i t i s not guaranteed that i n f o r m a t i o n to cease payments i s a l s o recorded i n a l l i n s t a n c e s i n the other computer system, i . e . by i n c l u s i o n of the i n d i v i d u a l i n c l a s s 9;. i i ) c l a s s 9 a l s o i n c l u d e s f i l e s of i n d i v i d u a l s who d i e d while working, and whose employer a d v i s e d the p l a n of the death. Some employers may r e g u l a r l y a d v i s e the plan of these events, some may never, and some may do so s p o r a d i c a l l y . These c o u l d be i d e n t i f i e d i n a review of the f i l e s , but what p r o p o r t i o n such deaths are of the t o t a l c l a s s 9 p o p u l a t i o n i s not c e r t a i n without such a review; i i i ) the e x i s t i n g pension plan a d m i n i s t r a t i o n i s the. r e s u l t of an amalgamation of two p l a n a d m i n s t r a t i o n s i n 1978. Whether complete data on deaths had been h e l d p r e v i o u s l y and f u l l y amalgamated i n t o the j o i n t records i s not c e r t a i n . 3 7 2. IWA/FOREST INDUSTRY HEALTH AND WELFARE PLAN T h i s plan has been i n e f f e c t s i n c e October, 1961. Wm. M. Mercer L t d . have been the a d m i n i s t r a t o r s s i n c e that time, m a i n t a i n i n g i n f o r m a t i o n on e l i g i b l e employees. Crown L i f e was the i n s u r e r fo r a l l b e n e f i t s to 1981; they continue to handle the group l i f e insurance b e n e f i t . CU&C i s , s i n c e 1981, the a d j u d i c a t o r of weekly indemnity c l a i m s . Enrollment cards are h e l d on each e n r o l l e e . They i n c l u d e name, s o c i a l insurance number, company, d i v i s i o n ; no address, phone number or job t i t l e are i n c l u d e d . Paper records are not r e t a i n e d beyond one and a h a l f year by Wm. M. Mercer. However, enrollment cards are a l s o h e l d on m i c r o f i c h e ; these records are comprehensive back to the e a r l y years of the p l a n . L i f e insurance death b e n e f i t s are payable f o r death while working, a c c i d e n t a l death on and o f f the job, death while on s i c k leave or Workers' Compensation, or f o r people who are d i s a b l e d but no longer on s i c k leave or compensation but s t i l l are e n r o l l e d i n the group l i f e p l a n . Not i n c l u d e d are pe n s i o n e r s . Mr. Reid of Wm. M. Mercer L t d . a d v i s e d (August, 1981, p e r s o n a l communication) that data from the Hea l t h and Welfare Plan are a c c e s s i b l e f o r the past f i v e y e a r s , f e a s i b l e to access f o r the past ten years and somewhat more d i f f i c u l t beyond ten y e a r s . Problems i n access are due to a d m i n i s t r a t i v e problems with the plan i n the e a r l y years and the f a c t that Mercer's o f f i c e s have moved twice s i n c e 1961; Crown L i f e ' s o f f i c e s have moved three times i n the same p e r i o d . 38 These data bases are the most c e n t r a l i z e d source of nominal r o l l i n f o r m a t i o n p o t e n t i a l l y going back to the e a r l y 1960's. Personal i d e n t i f y i n g i n f o r m a t i o n i n these records i s l i m i t e d however and might need to be supplemented by personnel and p a y r o l l r e c o r d s . F. EXPOSURE HISTORIES I d e a l l y , exposure i n f o r m a t i o n would be o f two k i n d s : i ) i n d u s t r i a l hygiene data q u a n t i f y i n g kinds of temperature, n o i s e , v i b r a t i o n and chemical exposures throughout the p r o d u c t i o n process, along with d e t a i l s of which jobs are s u b j e c t to which exposures, and i i ) comprehensive i n d i v i d u a l work and exposure h i s t o r i e s , documenting l o c a t i o n and d u r a t i o n of jobs performed as w e l l as any i n d i v i d u a l measurements done, whether a u d i o m e t r i c , blood, u r i n e , lung f u n c t i o n or other p h y s i c a l e v a l u a t i o n (e.g. weight over time, r e p o r t i n g of other h e a l t h problems such as d e r m i t i t i s , nausea, headaches, e t c . ) . E x i s t i n g data i n t h i s i n d u s t r y were l i m i t e d . Union records show only i n i t i a t i o n date and p l a c e of employment; no other job i n f o r m a t i o n i s h e l d . Company records are somewhat more h e l p f u l i n t h i s r e gard. Recent years have seen the development of s k i l l i n v e n t o r i e s and/or t r a i n i n g program records which t r a c k employees through job changes. These are not commonly h e l d and are f a i r l y r e c e n t , and t h e r e f o r e are o f . l i m i t e d u s e f u l n e s s i n the s h o r t term. 39 Personnel f i l e s sometimes enter job changes e i t h e r by n o t i f i c a t i o n s l i p s from s u p e r v i s o r s or e n t r i e s on a personnel c a r d . T h i s i s not done i n a l l companies nor do personnel s t a f f assure that such a r e c o r d i s complete and accurate even where i t i s done. To the extent that i t does e x i s t , i t i s the best source of h i s t o r i c a l i n f o r m a t i o n a v a i l a b l e . Seventeen of the t h i r t y - o n e s i t e s i n v e s t i g a t e d r e p o r t e d such job i n f o r m a t i o n i s h e l d by the personnel o f f i c e . Operations u s u a l l y have a d a i l y "personnel r e p o r t " or "manning sheet"; i t i s a d a i l y r e c o r d of who worked i n which p o s i t i o n s , f i l l e d out by s u p e r v i s o r s on each s h i f t . T h i s r e c o r d i s p o t e n t i a l l y very v a l u a b l e but nowhere was i t r e p o r t e d to be r e t a i n e d beyond two to three y e a r s . P a y r o l l records do not u s u a l l y i n d i c a t e a job t i t l e , but r a t e i s e i t h e r shown or determinable from a c a l c u l a t i o n of hours worked and gross e a r n i n g s . At l e a s t one pay o f f i c e r e p o r t e d h o l d i n g h i s t o r i c a l wage l i s t s a l l the way back to 1933. C u r r e n t l y there are twenty-three d i f f e r e n t pay r a t e s f o r jobs w i t h i n the b a r g a i n i n g u n i t i n sawmills and planer m i l l s ; v a r i o u s people i n the i n d u s t r y r e p o r t e d that h i s t o r i c a l l y t here were many more r a t e d i f f e r e n t i a l s . T h i s suggests that where no s p e c i f i c job i n f o r m a t i o n was o b t a i n a b l e f o r an i n d i v i d u a l on the nominal r o l l , some assessment of exposure c o u l d be made by determining a l i k e l y job h e l d as i n d i c a t e d by wage i n f o r m a t i o n from p a y r o l l records checked a g a i n s t an a p p r o p r i a t e wage schedule. T-4 forms, the most widely h e l d pay r e c o r d f o r e a r l y y e a r s , 40 are of l i t t l e a s s i s t a n c e i n determining exposure i n f o r m a t i o n . Records of i n d i v i d u a l medical or h e a l t h s t a t u s are l i m i t e d . Only one o p e r a t i o n r e p o r t e d conducting pre-employment medical exams; one other r e p o r t e d c e a s i n g t h i s p r a c t i c e i n 1975. A l l others a d v i s e d such exams had not been done and a l l o p e r a t i o n s s t a t e d no i n - s e r v i c e medical exams were or are conducted. The pre-employment medicals were d e s c r i b e d where p r a c t i c e d as s c r e e n i n g f o r p h y s i c a l f i t n e s s to do manual la b o u r . Other companies s t a t e d such sc r e e n i n g was done through a p p l i c a t i o n form q u e s t i o n s i n q u i r i n g whether the i n d i v i d u a l had any h e a l t h problems r e s t r i c t i n g t h e i r a b i l i t y to do the job a p p l i e d f o r . Changes i n h e a l t h s t a t u s (e.g. weight l o s s ) a r e , as a r e s u l t , not g e n e r a l l y a v a i l a b l e . The only i n - s e r v i c e medical or h e a l t h records r e p o r t e d were f i r s t a i d records and WCB audiometric t e s t r e s u l t s . Both union and management r e p r e s e n t a t i v e s a d v i s e d that complaints of problems now r e c o g n i z e d as p o t e n t i a l l y l i n k e d to CP exposure ( r e s p i r a t o r y problems, s k i n problems, nausea) are of a nature not t y p i c a l l y r e p o r t e d to f i r s t - a i d a t t e n d a n t s , although r e p o r t i n g of problems i d e n t i f i e d with CP exposure has i n c r e a s e d i n recent y e a r s . The only other source of medical or h e a l t h i n f o r m a t i o n r e p o r t e d was Workers' Compensation c l a i m forms and s i c k leave c l a i m s under the H e a l t h and Welfare indemnity p l a n . These are f r e q u e n t l y f i l e d i n an i n d i v i d u a l ' s personnel f i l e ; i n some op e r a t i o n s by year and a l p h a b e t i c a l l y i n a s u b j e c t f i l e e.g. WCB c l a i m s , 1.980. Few WCB c l a i m s are f i l e d t h a t r e p o r t CP 41 exposure as a c a u s a t i v e f a c t o r ; of approximately 350 d e r m a t i t i s time l o s s c l a i m s allowed per year with the B.C. Workers' Compensation Board, only s i x i n 1980 were i d e n t i f i e d as a s s o c i a t e d with CP exposure ( p e r s o n a l communication, WCB r e p r e s e n t a t i v e , August 1981). Thus i t appears on the b a s i s of c u r r e n t i n f o r m a t i o n that WCB c l a i m s or Health and Welfare plan c l a i m s c o u l d p r o v i d e l i t t l e a s s i s t a n c e i n i d e n t i f y i n g job/exposure r e l a t i o n s h i p s i n t h i s i n d u s t r y . G. GOODNESS OF FIT Table II shows which of the p e r s o n a l i d e n t i f y i n g i n f o r m a t i o n p r e f e r r e d by the S t a t i s t i c s Canada re c o r d l i n k a g e program i s o b t a i n a b l e from each of the sources mentioned above as w l l as the B.C. death c e r t i f i c a t e . O b v i o u s l y , i n f o r m a t i o n i s p a t c h i e r than i s most d e s i r e a b l e . Mechanisms are a v a i l a b l e which c o u l d improve upon the amount of i n f o r m a t i o n h e l d on each i n d i v i d u a l . For example, nominal r o l l l i s t s c o u l d be submitted to l o c a l committees of high s e n i o r i t y union and management people r e q u e s t i n g a d d i t i o n a l i n f o r m a t i o n . T h i s p r a c t i c e might be most u s e f u l i n e s t a b l i s h i n g exposure h i s t o r i e s and groupings and l a s t known a l i v e date. Recovery of as much p e r s o n a l i d e n t i f y i n g i n f o r m a t i o n as p o s s i b l e f o r a l l those ever employed s i n c e 1940 i n c o a s t a l lumber m i l l s u sing CPs would i n v o l v e reviewing a v a r i e t y of source documents, most of which are only e a s i l y r e t r i e v a b l e by computer technology i n recent y e a r s . Table II - B.C. Coast Lumber Industry: I d e n t i f y i n g Information A v a i l a b l e Records U n i o n P e r s o n n e l P a y r o l l J o i n t P e n s i o n Jo i n t H.&:.W.Plan B.C. Dea t h C e r t i f i c a t e Surname + P r e v i o u s surname 1st g i v e n name + Other g i v e n names (+) " U s u a l " name (.+ ). Sex + B i r t h d a t e B i r t h p l a c e -F a t h e r / M o t h e r names & b i r t h p l a c e s M a r i t a l s t a t u s (+)* Spouse's name/ b i r t h p l a c e (+)* S.I.N. + H e a l t h T.nfc . Number Can. P e n s i o n P l a n Number C u r r e n t Ad d r e s s ( w h i l e a member/employed) + ( + ) ( + ) + (+) •( + )' r e c e n t -o l d e r (+) ( + ) ( + ) + (+) (-) + ( + ) ( + ) ( + ) ( + ) ( + ) ( + ). ( + ) (.+ ). ( + ) ( + ) ( + ) ( + ) H i r e / Term, d a t e O c c u p a t i o n P l a c e of dea t h + (-)** + + (-) ( + ) (-) (.+ ).*** + Symbols: + : a v a i l a b l e i n r e c o r d (+) : p o s s i b l y a v a i l a b l e i n r e c o r d - : not a v a i l a b l e i n r e c o r d (-) : s m a l l p o s s i b i l i t y o f a v a i l a b i l i t y i n r e c o r d ? : no known i f i n f o r m a t i o n h e l d . * - t h i s i n f o r m a t i o n may be known i f a d e a t h b e n e f i t fund e x i s t s and the spouse i s the d e s i g n a t e d b e n i f i c i a r y . ** - p l a c e of employment w i l l be known; p o s i t i o n h e l d , o t h e r than b a r g a i n i n g u n i t member, w i l l not be known. *** - r e c o r d e d as " k i n d of work done d u r i n g most of l i f e " , and " k i n d of b u s i n e s s or i n d u s t r y i n wh i c h worked". 43 For the f e a s i b i l i t y study, i t was estimated that s e v e n t y - f i v e per cent of the records on a l l those ever employed since- 1940 are paper r e c o r d s . An estimate of t h i r t e e n person-years of c l e r i c a l work was proposed to examine pay records f o r three monthly i n t e r v a l s back to 1940. S t a f f i n g c o s t s f o r t h i s task were estimated at $260,000. V a l i d a t i o n (or supplementation) through examination of union records was estimated to c o s t an a d d i t i o n a l $130,000. A d d i t i o n a l c o s t s would be i n c u r r e d by attempting to i n t e g r a t e h e a l t h and welfare p l a n , pension p l a n , or management, co-worker, or p e r s o n a l r e c o l l e c t i o n i n t o the data base. The a t t r a c t i o n of using a l l a v a i l a b l e sources to maximize p e r s o n a l i d e n t i f y i n g i n f o r m a t i o n i s that t h i s would lower c o s t s and i n c r e a s e the e f f i c i e n c y of the r e c o r d l i n k a g e with outcome r e g i s t r i e s . 44 I I I . POLICY ISSUES AND OPTIONS A. IMPROVING THE FIT; POSSIBLE MECHANISMS Given a recognition of the inadequacies of current patterns of record keeping for occupational health research, as suggested by the case study, and a desire to improve the data base, i d e n t i f i c a t i o n of actors in the f i e l d of occupational health and safety and potential mechanisms for a l t e r i n g the current circumstances i s in order. In a report for the Economic Council of Canada, Hushion, O l g i l v i e Associates Ltd (1981) i d e n t i f y participants or "stakeholders" in occupational health and safety decision-making processes. They l i s t : • p r o v i n c i a l government bodies including the cabinet and cabinet committees, the caucus of the governing party, relevant executive arms of the government, departmental s t a f f , opposition parties and th e i r research organizations, Royal Commissions and other public policy review bodies; • labour organizations, including union l o c a l s , national or international bodies, union research s t a f f , p r o v i n c i a l and national federa-tions; • employer organizations, including p r o v i n c i a l and national organizations and organizations representing i n d u s t r i a l sectors; • occupational health and safety agencies, public 45 i n t e r e s t groups, and a s s o c i a t i o n s i n c l u d i n g t e c h n i c a l expert groups, (e.g. Canadian Centre f o r O c c u p a t i o n a l Health and S a f e t y , Canadian Standards A s s o c i a t o n , Canadian M e d i c a l A s s o c i a t i o n , Canadian P u b l i c H e a l t h A s s o c i a t i o n , Windsor O c c u p a t i o n a l S a f e t y and H e a l t h group (WOSH), Vancouver Committee on O c c u p a t i o n a l Safety and Health (VanCOSH); • i n d i v i d u a l p r o f e s s i o n a l s and experts i n the f i e l d (e.g. at u n i v e r s i t i e s or employed by i n d i v i d u a l f i r m s or u n i o n s ) ; • other government bodies, i n c l u d i n g other departments w i t h i n a p r o v i n c e and other p r o v i n c i a l and f e d e r a l agencies with s i m i l a r r e s p o n s i b i l i t i e s ; • and f i n a l l y i n d i v i d u a l employers, unions, o c c u p a t i o n a l groups or i n d i v i d u a l workers. Some of these can be e l i m i n a t e d as d e c i s i o n - t a k e r s i . e . able to take a c t i o n which would improve the data base f o r r e s e a r c h . For the most p a r t , only l a r g e employers and employer a s s o c i a t i o n s who a n t i c i p a t e being i n o p e r a t i o n twenty to f i f t y y ears i n the f u t u r e are l i k e l y to i n v e s t i n improved r e c o r d keeping f o r the purpose of o c c u p a t i o n a l h e a l t h and s a f e t y r e s e a r c h . For most employers the investment i n r e c o r d keeping f o r r e s e a r c h purposes cannot be economically j u s t i f i e d . The economic r a t i o n a l e f o r t h i s non-investment was b r i e f l y r e f e r r e d t o i n chapter 1 and i s more f u l l y d e s c r i b e d i n Appendix A. T e c h n i c a l expert groups and i n d i v i d u a l s , as w e l l as i n t e r e s t groups not composed of employers or trade unions have 46 no a u t h o r i t y to take a c t i o n with r e s p e c t to r e c o r d keeping, so can a l s o be e l i m i n a t e d as a c t o r s i n t h i s area. Governments other than p r o v i n c i a l a u t h o r i t i e s i n the j u r i s d i c t i o n i n qu e s t i o n are i n the same p o s i t i o n as i n t e r e s t groups. T h i s leaves p r o v i n c i a l and f e d e r a l governments and t h e i r s t a f f r e s p o n s i b l e f o r h e a l t h and s a f e t y r e g u l a t i o n i n t h e i r r e s p e c t i v e labour j u r i s d i c t i o n s 1 and trade unions as a c t o r s who have p o t e n t i a l l y an i n t e r e s t and a b i l i t y to improve the q u a l i t y of exposure records a v a i l a b l e f o r o c c u p a t i o n a l h e a l t h r e s e a r c h . What mechanisms are c o n c e i v a b l e to a f f e c t the maintenence of r e c o r d systems? Three routes can be i d e n t i f i e d : i ) f e d e r a l and p r o v i n c i a l labour l e g i s l a t i o n , . i i ) s t a t u t e s or r e g u l a t i o n s of agencies r e s p o n s i b l e f o r o c c u p a t i o n a l h e a l t h and s a f e t y ; i i i ) terms n e g o t i a t e d i n c o l l e c t i v e agreements. 1 F e d e r a l j u r i s d i c t i o n i n c l u d e s r a i l w a y s , l o n g s h o r i n g , i n t e r p r o v i n c i a l highway t r a n s p o r t , s h i p p i n g and f e r r i e s , telecommunications, a i r t r a n s p o r t , post o f f i c e , banking, g r a i n e l e v a t o r s and the f e d e r a l p u b l i c s e r v i c e . F e d e r a l Department of Labour employees are r e s p o n s i b l e f o r s a f e t y i n s p e c t i o n and a c c i d e n t p r e v e n t i o n under p a r t s three and four of the Canada Labour Code. P r o v i n c i a l j u r i s d i c t i o n i n c l u d e s a l l other p l a c e s of employment (Steeves, 1982). 47 1. F e d e r a l And P r o v i n c i a l Labour L e g i s l a t i o n Relevant l e g i s l a t i o n i n c l u d e s such employment-related areas as the Canada Labour Code, the Canada Pension Plan, the Unemployment Insurance Act, p r o v i n c i a l pension a c t s , p r o v i n c i a l employment standards a c t s ( i n B.C., The Employment Standards A c t ) , labour r e l a t i o n s l e g i s l a t i o n ( i n B.C., the B.C. Labour Code), and workers' compensation l e g i s l a t i o n . A l l of these p i e c e s of l e g i s l a t i o n v a r i o u s l y r e q u i r e that records be kept, and o f t e n be a v a i l a b l e on request f o r i n s p e c t i o n or a u d i t by a u t h o r i z e d people (Anson-Cartwright and Hollingshead,1980). The p e r i o d f o r which such records are r e q u i r e d to be kept by s t a t u t e are o f t e n not s p e c i f i e d (Anson-Cartwright and H o l l i n g s h e a d , 1980), a s i t u a t i o n which has given r i s e to c r i t i c i s m of government (Coffman, 1979). O r g a n i z a t i o n s such as ARMA ( A s s o c i a t i o n of Records Managers and A d m i n i s t r a t o r s ) have been urgin g the reform of r e g u l a t i o n s d e a l i n g with records r e t e n t i o n . The major motivator i n u r g i n g such reform i s concern about the c o s t s of m a i n t a i n i n g records i n d e f i n i t e l y . C u r r e n t l y i n Canada the f o l l o w i n g kinds of personnel records are r e q u i r e d by s t a t u t e to be r e t a i n e d (summarized from Anson-Cartwright and H o l l i g n s h e a d , 1980): • Canada Pension P l a n : r e q u i r e s annual p a y r o l l r e g i s t e r d e t a i l i n g employee c o n t r i b u t i o n s to be kept u n t i l w r i t t e n p e r m i s s i o n i s sought and r e c e i v e d to d e s t r o y . • Pension B e n e f i t s Standards Act ( f e d e r a l ) and some p r o v i n c i a l Pension B e n e f i t s A c t s : r e q u i r e pension 48 plan p a y r o l l r e g i s t e r s , actuary r e p o r t s , c o n t r i b u t i o n records, e t c . to be r e t a i n e d . F e d e r a l l e g i s l a t i o n s p e c i f i e s f i v e y e a r s ; p r o v i n c i a l l e g i s l a t i o n g e n e r a l l y does not s p e c i f y r e t e n t i o n time p e r i o d . Unemployment Insurance Act : r e q u i r e s p a y r o l l r e g i s t e r d e t a i l i n g employee c o n t r i b u t i o n s and employee s o c i a l insurance numbers to be r e t a i n e d u n t i l w r i t t e n permission i s r e c e i v e d to destroy them. Canada Labour Code: r e q u i r e s employee f i l e s i n c l u d i n g a p p l i c a t i o n s and t r a n s f e r s , job d e s c r i p t i o n s , p a y r o l l r e g i s t e r s d e t a i l i n g hours worked and wage r a t e , time ca r d s , union c o n t r a c t s , and labour r e l a t i o n s records and correspondence to be r e t a i n e d f o r three years from the time the work i s performed. Canada Labour Code r e q u i r e s records of a c c i d e n t s and i n j u r i e s to be r e t a i n e d f o r one year. P r o v i n c i a l labour standards l e g i s l a t i o n r e q u i r e s employee f i l e s i n c l u d i n g ( u s u a l l y ) hours worked and wage r a t e s , p a y r o l l r e g i s t e r s , and r e c o r d of v a c a t i o n s t o be r e t a i n e d . The time p e r i o d v a r i e s from none s p e c i f i e d i n some j u r i s d i c t i o n s to a few months to up to f i v e years f o l l o w i n g t e r m i n a t i o n i n other j u r i s d i c t i o n s . P r o v i n c i a l workers' compensation l e g i s l a t i o n 49 r e q u i r e s r e t e n t i o n of p a y r o l l r e g i s t e r s and records of i n j u r i e s and f i r s t a i d treatment f o r u n s p e c i f i e d p e r i o d s of time. These records are only a small f r a c t i o n of the records business i s r e q u i r e d to r e t a i n . L e g i s l a t i o n on income tax ( f e d e r a l and p r o v i n c i a l ) , s a l e s tax ( f e d e r a l and p r o v i n c i a l ) , custom d u t i e s , i n c o r p o r a t i o n and l i q u i d a t i o n , a l l r e q u i r e r e c o r d r e t e n t i o n . The (now defunct) O f f i c e f o r the Reduction of Paperburden ( F e d e r a l Department of Industry, Trade and Commerce) submitted to the f e d e r a l government a p r o p o s a l to c l a r i f y what records must be r e t a i n e d and f o r what p e r i o d s of time. Government watchers suggest these recommendations have a good l i k l i h o o d of being implemented (Lamphier, 1982).. T a x a t i o n records (which p o t e n t i a l l y w i l l cover a good p o r t i o n of nominal r o l l i n f o r m a t i o n ) are recommended for a s i x year r e t e n t i o n p e r i o d , a c c o r d i n g to Lamphier (1982). P r o v i n c i a l and f e d e r a l l e g i s l a t i o n does not impinge s i g n i f i c a n t l y upon the r e c o r d keeping p a t t e r n s of labour o r g a n i z a t i o n s . Nancy Stindon (1977) s t a t e s ... u n l i k e business,...Canadian labour o r g a n i z a t i o n s are under l i t t l e s t a t u t o r y compulsion to keep c e r t a i n types of r e c o r d s . . . . Labour o r g a n i z a t i o n s make no p r o f i t s , and t h e r e f o r e do not pay taxes and cannot r e c e i v e tax c r e d i t s . Money put i n t o r e c o r d keeping b r i n g s no d i r e c t or i n d i r e c t tax deductions. ... The r e s u l t i s p r e d i c t a b l e : with few e x c e p t i o n s , union records are p o o r l y o r g a n i z e d and s e r v i c e d . . . d i s p o s a l i s haphazard. 50 The above d i s c u s s i o n suggests t h a t , p a r t i c u l a r l y with respect to business, there are w e l l - e s t a b l i s h e d mechanisms f o r r e q u i r i n g the r e t e n t i o n of r e c o r d s . There are r e a l q u e s t i o n s however about the e f f e c t i v e n e s s of these r u l e s , p a r t i c u l a r l y beyond p e r i o d s of f i v e y ears, given the myriad of o v e r l a p p i n g j u r i s d i c t i o n s and purposes, and the apparent r e s u l t i n g c o n f u s i o n and i r r i t a t i o n i n the business community. Costs of r e t a i n i n g records beyond ten or even f i v e years may be i n c r e a s i n g l y p r o t e s t e d , u n l e s s i n c e n t i v e s such as tax c r e d i t s can be pr o v i d e d . 2. Oc c u p a t i o n a l H e a l t h And Safety R e g u l a t i o n s The Workers' Compensation Board of B.C. i s c o n s t i t u t e d under the a u t h o r i t y of the Workers' Compensation A c t . I t has r e s p o n s i b i l i t y f o r compensation f o r i n j u r y or death a r i s i n g out of and i n the course of employment ( s e c t i o n 6 ( 1 ) ) , compensation f o r i n d u s t r i a l d i s e a s e i f the worker i s d i s a b l e d from e a r n i n g f u l l wages or d i e s of the d i s e a s e ( s e c t i o n 7 ( 1 ) ) , and r e s p o n s i b i l i t y f o r making r e g u l a t i o n s , of gen e r a l or s p e c i a l a p p l i c a t i o n , a p p l y i n g to workers, employers, and a l l other persons working i n or c o n t r i b u t i n g to the p r o d u c t i o n of any i n d u s t r y w i t h i n the j u r i s d i c t i o n of the Act, " f o r the p r e v e n t i o n of i n j u r i e s and i n d u s t r i a l d i s e a s e s i n employments and p l a c e s of employments" ( s e c t i o n 6 0 ( 1 ) ) . The Act s t a t e s s p e c i f i c a l l y that "The Board may is s u e orders and d i r e c t i v e s s p e c i f y i n g the means or requirements to be adopted i n any or a l l employments or p l a c e s of employment f o r the p r e v e n t i o n of i n j u r i e s and 51 i n d u s t r i a l d i s e a s e s " ( s e c t i o n 6 0 ( 2 ) ) . The Board i s s p e c i f i c a l l y a u t h o r i z e d to i n s p e c t p l a c e s of employment, engage i n e d u c a t i o n a l programs, and undertake or support r e s e a r c h . B.C. i s the only j u r i s d i c t i o n i n Canada where the compensation and pr e v e n t i o n s e r v i c e s are c a r r i e d out by the same agency, e x t e r n a l to the p r o v i n c i a l government. T h i s has been the case s i n c e the Board was e s t a b l i s h e d i n 1917. 1 T h i s j o i n t r e s p o n s i b i l i t y , although unusual, was s p e c i f i c a l l y recommended by the Pineo Commission i n 1916 i n the hope that awareness of the hazards of employment as evidenced by compensation c l a i m s would pr o v i d e m o t i v a t i o n f o r e f f e c t i v e p r e v e n t i v e a c t i o n (Reasons, et al.,1981). The t e r r i t o r y covered by i n d u s t r i a l h e a l t h and s a f e t y r e g u l a t i o n s ( p r e v i o u s l y known as a c c i d e n t p r e v e n t i o n r e g u l a t i o n s ) i n B.C. i s broad, ranging from s p e c i f i c p h y s i c a l arrangements to permissable l e v e l s of t o x i c substances, to p r a c t i c e s and procedures to be adhered t o , to c o n s t i t u t i o n of The B.C. M i n i s t r y of Labour r e t a i n s some j u r i s d i c t i o n over o c c u p a t i o n a l environments v i a , f o r i n s t a n c e , the F a c t o r i e s A c t . T h i s i n v o l v e s standards f o r heat, l i g h t , v e n t i l a t i o n and s a n i t a t i o n i n most workplaces as w e l l as the l a b e l l i n g and d i s p o s a l of dangerous substances. A l s o , the a u t h o r i t y to i n s p e c t mines and t r a i n mining b l a s t e r s i s r e t a i n e d by the p r o v i n c i a l government under the Mines Re g u l a t i o n s Act, ad m i n i s t e r e d by the M i n i s t r y of Mines and Petroleum Resources. A g r i c u l t u r a l workers are not i n c l u d e d i n any compensation or o c c u p a t i o n a l h e a l t h and s a f e t y program u n t i l A p r i l 1983, when they w i l l be under the j u r i s d i c t i o n of the Workers' Compensation Board. Domestic workers continue to be excluded from any such program. Areas of employment under f e d e r a l j u r i s d i c t i o n (the Canada Labour Code) are i n s p e c t e d by the p r o v i n c i a l agency f o r o c c u p a t i o n a l h e a l t h and s a f e t y i s s u e s under a c o o p e r a t i v e arrangement. Note a l s o that the Commissioners of the B.C. Compensation Board are appointed by the Lieutenant-Governor i n C o u n c i l ( e s s e n t i a l l y the p r o v i n c i a l c a b i n e t ) (Steeves, 1982). 52 programs and committees at workplaces. With r e s p e c t to r e c o r d keeping, a number of r e g u l a t i o n s a l r e a d y e x i s t r e q u i r i n g employers to maintain p a r t i c u l a r records on employees. The most g e n e r a l , and f o r the purposes of t h i s d i s c u s s i o n , the p o t e n t i a l l y most u s e f u l , i s r e g u l a t i o n 4 . 5 ( f ) . T h i s r e g u l a t i o n s t i p u l a t e s that the c ontents of an i n d u s t r i a l h e a l t h and s a f e t y program, which i s r e q u i r e d i n a l l workplaces depending on the number of employees and hazard category, or at the d i r e c t i o n of a Board o f f i c e r , i n c l u d e "the maintenance of records and s t a t i s t i c s , i n c l u d i n g r e p o r t s of i n s p e c t i o n s and a c c i d e n t i n v e s t i g a t i o n s , . . . " . A d d i t i o n a l and more p a r t i c u l a r r e f e r e n c e s to maintenence of records on employees are as f o l l o w s : • s e c t i o n 13.35(5) p r o v i d e s that employers s h a l l maintain permanent records f o r each worker i n an audiometric program and that the r e c o r d w i l l be kept f o r at l e a s t f i v e years a f t e r t e r m i n a t i o n of employment. • s e c t i o n 78.11 p r o v i d e s t h a t medical records generated under the requirements f o r p a r t i c u l a r occupations " s h a l l be maintained under the custody and c o n t r o l of the o c c u p a t i o n a l p h y s i c i a n i n a manner accept a b l e to the Board" and that i t i s not a v a i l a b l e to the employer or any person other than the Board without the informed consent of the worker. Note that s e c t i o n 78, d e a l i n g with o c c u p a t i o n a l medical concerns, has not yet been 53 d e c l a r e d to be i n e f f e c t . • Records are a l s o r e q u i r e d to be kept and made a v a i l a b l e f o r v a r i o u s p i e c e s of equipment and atmospheric t e s t i n g ( s e c t i o n s 40, 56 and 72). These r e g u l a t i o n s c e r t a i n l y e s t a b l i s h a precedent f o r the Workers' Compensation Board to r e q u i r e that records be kept by employers. A mechanism e x i s t s then f o r the Board in B.C. to r e q u i r e employment records of a s p e c i f i e d nature (e.g. c o n t a i n i n g i n f o r m a t i o n proposed by S t a t i s t i c s Canada as optimal f o r l i n k a g e purposes) to be h e l d i n a s i m i l a r manner with respect to c o n f i d e n t i a l i t y as the medical records d e s c r i b e d i n s e c t i o n 78.11 of the e x i s t i n g r e g u l a t i o n s . T h i s c o u l d be done w i t h i n the j o i n t mandate of p r e v e n t i n g i n j u r i e s and d i s e a s e and i n v e s t i g a t i n g a c c i d e n t s and causes of i n d u s t r i a l d i s e a s e , as d e s c r i b e d i n the B.C. I n d u s t r i a l H e a l t h and S a f e t y R e g u l a t i o n s , 1978, page v i i i . The mechanisms d e s c r i b e d f o r B.C. c o u l d be a p p l i e d i n any of the other j u r i s d i c t i o n s i n Canada. O c c u p a t i o n a l h e a l t h and s a f e t y agencies e x i s t i n a l l p r o v i n c e s and r e g u l a t i o n s a c r o s s j u r i s d i c t i o n s are s u b s t a n t i a l l y s i m i l a r . T h i s r e s u l t s from the r e g u l a t i o n and i n s p e c t i o n o r i e n t a t i o n which developed h i s t o r i c a l l y i n North America as a whole with respect to o c c u p a t i o n a l h e a l t h and s a f e t y programs. Trends i n the 1970's i n Canada have continued i n t h i s approach, with the enactment of comprehensive h e a l t h and s a f e t y l e g i s l a t i o n i n a number of j u r i s d i c t i o n s and the a d m i n i s t r a t i v e c o n s o l i d a t i o n of v a r i o u s 54 government programs (Aykroyd, 1978). Some emphasis on r e c o r d keeping can be seen i n recent l e g i s l a t i v e changes; f o r i n s t a n c e , the O n t a r i o H e a l t h and S a f e t y Act of 1979 r e q u i r e s employers to maintain records on i n d i v i d u a l worker's exposure to p a r t i c u l a r i n d u s t r i a l agents. o 3. C o l l e c t i v e Agreements C o l l e c t i v e agreements i n B.C. r e f l e c t l i m i t e d a c t i v i t y i n n e g o t i a t i o n s on h e a l t h and s a f e t y i s s u e s . Twenty-eight per cent of c o n t r a c t s reviewed by the B.C. M i n i s t r y of Labour in 1981 had no p r o v i s i o n s d e a l i n g with o c c u p a t i o n a l h e a l t h and s a f e t y (note: c o n t r a c t s reviewed were those c o v e r i n g more than 100 workers and submitted to the M i n i s t r y ; 379 c o n t r a c t s c o v e r i n g 330,425 workers were reviewed) (Negotiated Working C o n d i t i o n s 1981, B.C. M i n i s t r y of Labour). V a r i a t i o n a c r o s s s e c t o r s i s s i g n i f i c a n t . C o n s t r u c t i o n c o n t r a c t s most f r e q u e n t l y have o c c u p a t i o n a l h e a l t h and s a f e t y c l a u s e s of some kind; only 3/37 c o n t r a c t s i n t h i s area have no p r o v i s i o n s , a f f e c t i n g only s i x per cent of the workers represented by those c o n t r a c t s . Trade and s e r v i c e s e c t o r c o n t r a c t s are l e a s t l i k e l y to have occupatonal h e a l t h and s a f e t y p r o v i s i o n s : 22/35 c o n t r a c t s have no p r o v i s i o n s , a f f e c t i n g 72.7% of the workers rep r e s e n t e d . H e a l t h , education and crown c o r p o r a t i o n c o n t r a c t s come c l o s e behind, with 38/82 c o n t r a c t s have no p r o v i s i o n s , a f f e c t i n g 60.3% of the workers rep r e s e n t e d . Where o c c u p a t i o n a l h e a l t h and s a f e t y appears i n c o n t r a c t s , 55 i t f o r the most part i s to provide f o r j o i n t h e a l t h and s a f e t y committees (which are mandatory i n B.C. i n a number of s e c t o r s where more than 20, or i n some cases 50, workers are employed), e s t a b l i s h r u l e s about c l o t h i n g and equipment, and address r e f u s a l to work i n dangerous c o n d i t i o n s (again, r i g h t s p r o v i d e d through h e a l t h and s a f e t y r e g u l a t i o n s of the Workers' Compensation A c t ) . Where l e g i s l a t e d r i g h t s and r e s p o n s i b i l i t i e s are w r i t t e n i n t o c o l l e c t i v e agreements, they do not r e f l e c t gains due to c o l l e c t i v e b a r g a i n i n g , but may r e f l e c t an i n t e r e s t by e i t h e r or both p a r t i e s to educate themselves and remain a l e r t to these i s s u e s . The remaining area addressed by r e l e v a n t p r o v i s i o n s i s pay f o r h e a l t h and s a f e t y committee members f o r time spent on committee matters. Twenty-three per cent of agreements i n manufacturing ( c o v e r i n g 57% of workers), 10.8% of agreements i n c o n s t r u c t i o n (11.5% of workers), 41.35% of agreements i n other i n d u s t r i e s (33.6% of workers), 15.9% of agreements i n h e a l t h , education and crown c o r p o r a t i o n s (9% of workers) and 2.9% of agreements i n trade and s e r v i c e (0.8% of workers) p r o v i d e f o r pay f o r time spent on s a f e t y and h e a l t h committee matters. Notwithstanding the l i m i t e d nature of p r o v i s i o n s c u r r e n t l y i n c o l l e c t i v e agreements regarding o c c u p a t i o n a l h e a l t h and s a f e t y , as demonstrated by the summary above, i t i s q u i t e p o s s i b l e to conceive of c o n t r a c t language that would address the i s s u e of adequate nominal r o l l i n f o r m a t i o n to be h e l d i n p e r p e t u i t y . Such a c l a u s e c o u l d s p e c i f y e x a c t l y what in f o r m a t i o n would be c o l l e c t e d , presumably p o s t - h i r e ; whether or 56 not i t would be h e l d independently of personnel and/or p a y r o l l r e c o r d s ; what i n f o r m a t i o n would not be h e l d ; whether or not d u p l i c a t e f i l e s would be h e l d by the employer and the union, or by only one of them and which one, or by a t h i r d p a r t y ; and what c o n d i t i o n s might be attached to use of such r e c o r d s . T h i s l a s t category might be as broad as p r o v i d i n g simply that any use must be j o i n t l y agreed to by both p a r t i e s or might s p e c i f y a committee or i n d i v i d u a l s who have the r e s p o n s i b i l i t y of approving use and a c c e s s , or even s p e c i f y the kinds of purposes to which the data can be made a v a i l a b l e and purposes f o r which i t i s not to be r e l e a s e d . An e x i s t i n g s i t u a t i o n which has some of these c h a r a c t e r i s t i c s i s the j o i n t IWA/Forest Industry Pension P l a n . The Plan has a board of d i r e c t o r s composed of both employer and IWA r e p r e s e n t a t i v e s . Access to the pension records h e l d f o r purposes of o c c u p a t i o n a l h e a l t h r e s e a r c h r e q u i r e s the approval of the board (presumably fo r p a r t i e s other than the plan a d m i n i s t r a t o r ) . 4. C o n c l u s i o n A number of mechanisms have been i d e n t i f i e d f o r improving the q u a l i t y of nominal r o l l i n f o r m a t i o n f o r use i n o c c u p a t i o n a l h e a l t h r e s e a r c h . The f i n a l s e c t i o n of t h i s chapter w i l l d i s c u s s these again b r i e f l y i n the context of r e a l i s t i c p o l i c y o p t i o n s . 57 B. THE CONFIDENTIALITY ISSUE Any d i s c u s s i o n of r e s e a r c h i s not complete without a t t e n d i n g to the e t h i c a l q u e s t i o n s surrounding the sources of data, i t s use and d i s s e m i n a t i o n . A number of important s o c i a l i s s u e s are i n v o l v e d , s p e c i f i c a l l y those of p r i v a c y , c o n f i d e n t i a l i t y , and the i n d i v i d u a l ' s access to h i s / h e r own r e c o r d s , as w e l l as the d e s i r e f o r i n c r e a s e d access by r e s e a r c h e r s f o r use of personnel records i n the p u b l i c i n t e r e s t . T h i s s e c t i o n w i l l attempt to p r o v i d e u s e f u l d e f i n i t i o n s of these concepts, an e v a l u a t i o n of the s i g n i f i c a n c e of m i c r o e l e c t r o n i c technology, and a review of some pro p o s a l s that have been made to r e s o l v e the apparent c o n f l i c t s i n t h i s a r e a . 1. P r i v a c y And C o n f i d e n t i a l i t y As An Issue The q u e s t i o n of the i n d i v i d u a l ' s r i g h t to p r i v a c y versus the p o t e n t i a l i n t e r e s t and a b i l i t y of governments and t h e i r a gencies, employers, medical care p r o v i d e r s and i n s t i t u t i o n s , p o l i c e and the j u s t i c e system, f i n a n c i a l i n s t i t u t i o n s and marketing o r g a n i z a t i o n s , among o t h e r s , to o b t a i n , use and disseminate p e r s o n a l i n f o r m a t i o n has become a t o p i c of i n t e r n a t i o n a l a t t e n t i o n . Some of the major s t u d i e s i n the area are the f o l l o w i n g : • Report of the Committee on P r i v a c y (the Younger Report), Great B r i t a i n , 1 9 7 2 ; ' • Data and P r i v a c y , Report of the Committee on ! 58 Automated Personal Systems, Sweden, 1972; 1 • P r i v a c y and Computers, Canadian Departments of Communications and J u s t i c e , 1972; 1 • Records, Computers and the Rig h t s of C i t i z e n s : Report of the S e c r e t a r y ' s A d v i s o r y Committee on Automated Personal Data Systems, U.S. Department of H e a l t h , Education and Welfare, 1973; • Commission on Automation and L i b e r t y (Commission Informatique et L i b e r t e s ) , France, 1975; 2 • Personal P r i v a c y i n an Information S o c i e t y , Report of the P r i v a c y P r o t e c t i o n Study Commission, U.S. Congress, 1977; • P r i v a c y and Personal Information, A u s t r a l i a n Law Reform Commission, 1980; 3 • Report of the Commission of I n q u i r y i n t o the C o n f i d e n t i a l i t y of H e a l t h Information (the Krever Commission), O n t a r i o , 1980. Not s u r p r i s i n g l y these s t u d i e s have generated l e g i s l a t i v e a c t i o n on the one hand (e.g. the U.S. P r i v a c y Act of 1974 a f f e c t i n g access to U.S. f e d e r a l r e c ords f o r r e s e a r c h purposes, among other t h i n g s ; the U.S. Tax Reform B i l l of 1976 f o r b i d d i n g r e l e a s e of any i n f o r m a t i o n from tax r e t u r n s ) , and conferences, 1 c i t e d i n U.S. Department of He a l t h , Education and Welfare, 1973. 1 c i t e d i n U.S. Department of H e a l t h , Education and Welfare, 1973. 2 c i t e d i n Westin, 1976 and Krever, 1980. 3 c i t e d i n Krever, 1980. 59 p o s i t i o n papers, j o u r n a l a r t i c l e s and g e n e r a l d i s c u s s i o n at v a r i o u s l e v e l s and among v a r i o u s p r o f e s s i o n a l and p o l i c y making bodies on the o t h e r . 1 T h i s wave of concern has c r e a t e d such a s t i r as to warrant, a c c o r d i n g to some authors, a d e s c r i p t i o n as a ' r e v o l u t i o n ' . R e i n e r t (1981) s t a t e s "during the l a s t f i f t e e n years p r i v a c y concerns have become acute, provoking a s o c i a l response that has been termed 'a p r i v a c y r e v o l u t i o n ' . " 2 Causes of t h i s heightened p u b l i c concern are a t t r i b u t e d by R e i n e r t (1981) to i n c r e a s i n g p u b l i c d i s t r u s t of s o c i a l i n s t i t u t i o n s and the p e r c e i v e d a b i l i t y of new e l e c t r o n i c data p r o c e s s i n g technology to i n c r e a s e the power of i n s t i t u t i o n s i n c o l l e c t i n g , m a i n t a i n i n g , u s i n g and d i s s e m i n a t i n g p e r s o n a l i n f o r m a t i o n . Westin (1976) s i m i l a r l y a t t r i b u t e s i n c r e a s e d concern to d i s t r u s t of government which, speaking about the USA, he dates from the l a t e 1960's and p a r t i c u l a r l y the Watergate r e v e l a t i o n s of 1973-4. T h i s c l i m a t e of d i s t r u s t i s i n c o n t r a s t , Westin argues, to the p e r i o d 1932-68 which saw growing p u b l i c acceptance of government a u t h o r i t y r e v e a l e d i n the 'New Deal' of the 1930's, the U.S. r o l e i n World War II and the C o l d War, and the Great S o c i e t y programs of the 1960's. Westin a l s o c r e d i t s i n c r e a s e d concern about medical 1 For example: B.C. H e a l t h A s s o c i a t i o n , D i s c u s s i o n Paper on the C o n f i d e n t i a l i t y of H e a l t h Information, J u l y , 1982; N a t i o n a l Cancer I n s t i t u t e Workshop on Computerized Record Linkage in Cancer Epidemiology, Ottawa, 1979; Hazards at Work: Law and the Workplace, N a t i o n a l Seminar, Toronto, 1977; Medical Research C o u n c i l of Canada, Working Group on E t h i c s i n Human Experimentation, 1978; p l u s see a number of j o u r n a l a r t i c l e s r e f e r e n c e d i n the b i b l i o g r a p h y . 2 R e i n e r t (1981) c i t e s M i l l e r , "The P r i v a c y R e v o l u t i o n : A Report from the B a r r i c a d e s " , Washburn Law Review, 19(1), 1979. 6 0 records and in f o r m a t i o n s p e c i f i c a l l y to the entry of consumerism and a c i v i l r i g h t s ( p a t i e n t s ' r i g h t s ) stance i n t o the h e a l t h care f i e l d i n the l a s t f i f t e e n y e a r s . The d i s c u s s i o n of c i v i l r i g h t s and human r i g h t s concerns g e n e r a l l y i n the l a s t t w e n t y - f i v e years has had at i t s c e n t r e the d i g n i t y of a l l persons, r e g a r d l e s s of race, or sex, or age, or a b i l i t y , or s o c i a l c l a s s . Krever(1980) makes the l i n k between t h i s concept and the p r i v a c y / c o n f i d e n t i a l i t y i s s u e i n h i s opening comments i n the r e p o r t of the O n t a r i o Commission: The need f o r p r i v a c y that a l l of us have ... [ i s ] a dimension of human p e r s o n a l i t y and d i g n i t y ... ( v.1 p. 6 ) . ... C o n f i d e n t i a l i t y i s fundamental ... to the p r e s e r v a t i o n of the d i g n i t y and i n t e g r i t y of the i n d i v i d u a l ... (v.3 p.41). 2. Some D e f i n i t i o n s A f r e q u e n t l y quoted d e f i n i t i o n of p r i v a c y , and the one adopted by the Krever Commission (1980) i s from Westin (1967): P r i v a c y i s the c l a i m of i n d i v i d u a l s , groups and i n s t i t u t i o n s to determine f o r themselves when, how, and to what extent i n f o r m a t i o n about them i s communicated. R e i n e r t (1981) makes the p o i n t t h a t c e n t r a l to the many d e f i n i t i o n s of p r i v a c y that have been p r o f f e r e d i s the p r e s e r v a t i o n of i n d i v i d u a l autonomy and d i g n i t y a g a i n s t the i n t r u d i n g and conforming pressure of s o c i a l o r g a n i z a t i o n . A d e f i n i t i o n of i n d i v i d u a l p r i v a c y based i n i n d i v i d u a l c o n t r o l over p e r s o n a l i n f o r m a t i o n i s the s t a r t i n g p o i n t f o r most recent examinations of p r i v a c y and r e c o r d keeping. 61 The concept of c o n f i d e n t i a l i t y s h i f t s a t t e n t i o n s l i g h t l y to focus on the r o l e of i n d i v i d u a l s and i n s t i t u t i o n s who h o l d or have access to p e r s o n a l i n f o r m a t i o n about other people. C o n f i d e n t i a l i t y speaks to the r e s p o n s i b i l i t y to h o l d i n confidence that which i s p r i v a t e , meaning of a p e r s o n a l nature. K reverO980) s t a t e s : I m p l i c i t i n the d e f i n i t i o n [of p r i v a c y ] i s the e x i s t e n c e of an o b l i g a t i o n on the p a r t of those i n p o s s e s s i o n of the i n f o r m a t i o n to r e s p e c t the c l a i m [to determine when, how, and to what extent p e r s o n a l i n f o r m a t i o n i s communicated to o t h e r s ] of those whom the i n f o r m a t i o n concerns. Westin (1979) p r o v i d e s p r a c t i c a l d e f i n i t i o n s of these two concepts which he s t a t e s were a l s o used i n the U.S. Department of Commerce, N a t i o n a l Bureau of Standards study (Westin, .1976) and a N a t i o n a l Academy of S c i e n c e s ' P r o j e c t on Databanks ( 1972) . 1 • P r i v a c y : the q u e s t i o n of what p e r s o n a l i n f o r m a t i o n i t i s r e l e v a n t f o r an o r g a n i z a t i o n to c o l l e c t or s t o r e at a l l . • C o n f i d e n t i a l i t y : the q u e s t i o n of how i n f o r m a t i o n about i n d i v i d u a l s should be d i s t r i b u t e d w i t h i n the o r g a n i z a t i o n and when i t should be r e l e a s e d to o u t s i d e r s . Westin, A.F. and M.A. Baker. Databanks i n a Free S o c i e t y , New York, Quadrangle , 1972 c i t e d i n Westin, 1979. 62 3. I n d i v i d u a l Versus P u b l i c I n t e r e s t s Much of the evidence and o p i n i o n presented to the Krever Commission (1980) by re s e a r c h e r s had as i t s purpose to e s t a b l i s h that there i s a p u b l i c i n t e r e s t served by r e s e a r c h which accesses p e r s o n a l i n f o r m a t i o n . Examples of evidence making t h i s argument were quoted at l e n g t h i n the Krever Commission Report (1980), i n c l u d i n g the p r e s e n t a t i o n of the F a c u l t y of H e a l t h S c i e n c e s , McMaster U n i v e r s i t y , j o u r n a l a r t i c l e s by S i r Ri c h a r d D o l l 1 and Leon G o r d i s and E l l e n Gold (1980). Go r d i s and Gold (1980), as w e l l as o f f e r i n g s p e c i f i c examples of s t u d i e s u s i n g records that have made s i g n i f i c a n t c o n t r i b u t i o n s to human knowledge of d i s e a s e c a u s a t i o n , present a c l e a r statement on the iss u e of p r i v a t e versus p u b l i c i n t e r e s t s i n the area: S o c i e t y has a v i t a l stake i n e p i d e m i o l o g i c a l and other medical r e s e a r c h . We must ensure that the d i g n i t y and p r i v a c y of s u b j e c t s w i l l be p r o t e c t e d without h i n d e r i n g the advancement of knowledge of d i s e a s e . The s o c i a l c o n t r a c t that f a c i l i t a t e s the e x i s t e n c e of i n d i v i d u a l s w i t h i n s o c i a l groups r e q u i r e s that each i n d i v i d u a l o c c a s i o n a l l y y i e l d some of h i s r i g h t s , i n c l u d i n g p r i v a c y and freedom of a c t i o n , f o r the b e n e f i t of s o c i e t y as a whole. ... Each s o c i e t y must decide when a l i m i t e d compromise of i n d i v i d u a l r i g h t s i s j u s t i f i e d by the p o t e n t i a l b e n e f i t s to be d e r i v e d by the community as a whole. I n v e s t i g a t i o n of the e t i o l o g y of d i s e a s e and n a t u r a l h i s t o r y of di s e a s e and of the e f f e c t i v e n e s s of p r e v e n t i v e and t h e r a p e u t i c i n t e r v e n t i o n s are of great p o t e n t i a l b e n e f i t to s o c i e t y , but the conduct of such s t u d i e s r e q u i r e s t h a t , with proper safeguards, i n d i v i d u a l l y i d e n t i f i a b l e data from medical records continue to be made a c c e s s i b l e f o r medical and e p i d e m i o l o g i c a l r e s e a r c h . 1 D o l l , R. "The Epidemic of Cancer", Cancer, 45, 2475-85, May 15,1980 c i t e d i n Krever, 1980. 63 Krever found the evidence c o m p e l l i n g and agreed that the i n d i v i d u a l ' s r i g h t to c o n f i d e n t i a l i t y i s not an a b s o l u t e one, but a l i m i t e d r i g h t . "Despite my strong c o n v i c t i o n that c o n f i d e n t i a l i t y i s fundamental, I am persuaded that r e s e a r c h i s one respect i n which the b e n e f i t to s o c i e t y by r e s e a r c h e r s ' access to p e r s o n a l h e a l t h i n f o r m a t i o n outweighs the p o s s i b l e r i s k to the i n d i v i d u a l . " ( Krever,1980. v . I l l ) Judgement must be r e l i e d upon i n each case however: "the d e t e r m i n a t i o n must s t i l l be made of the circumstances i n which the balance f a v o r s s o c i e t y . " (Krever, 1980. v . I l l ) T h i s d e t e r m i n a t i o n that i n d i v i d u a l i n t e r e s t s must be weighed a g a i n s t p u b l i c i n t e r e s t s echoes an e a r l i e r statement by Howard B. Newcombe, a Canadian a c t i v e i n the f i e l d of r e c o r d l i n k a g e and e p i d e m i o l o g i c a l r e s e a r c h . In a speech at a n a t i o n a l seminar t i t l e d Hazards at Work h e l d i n Toronto, O n t a r i o i n 1977 he d e s c r i b e d the i s s u e t h i s way: What are the r i g h t s of the people involved? I would propose that there are three r i g h t s that must be p r o t e c t e d , not j u s t s i n g l y but together and at the same time. • There i s the r i g h t to i n d i v i d u a l p r i v a c y , so that no harm or embarrassment comes to a person from any use to which h i s records may be put. • There i s furthermore the r i g h t of a person to p r o t e c t i o n of h i s h e a l t h , through e a r l y i d e n t i f i c a t i o n of the causes of p o t e n t i a l l y p r e v e n t a b l e d i s e a s e s to which he may be exposed. (For t h i s purpose he may have reason to expect that h i s r e c o r d s , and those of h i s c o n f r e r e s , w i l l be used to the best p o s s i b l e advantage.) • F i n a l l y there i s the r i g h t of the c u s t o d i a n of these records to be p r o t e c t e d when he permits them to be used f o r a p p r o p r i a t e s t u d i e s designed to reduce d i s e a s e , i n ways which are c o n s i s t e n t with the c o n f i d e n t i a l i t y requirements of the r e l e v a n t s t a t i s t i c s a c t s . 64 I submit that these are not competing p r i n c i p l e s . I t i s p o s s i b l e and p r a c t i c a l now to employ them a l l . To emphasize any one of the p r i n c i p l e s to the e x c l u s i o n of the others i s dangerous, and i n p a r t i c u l a r to emphasize the f i r s t of them at the expense of the second and t h i r d does d i s s e r v i c e to those people who have a need f o r p r o t e c t i o n a g a i n s t a v o i d a b l e r i s k s . (Newcombe, 1977) The framework of t h i s d i s c u s s i o n i s now f a i r l y c l e a r . In our s o c i e t y , strong emphasis i s p l a c e d on the i n d i v i d u a l ' s r i g h t to c o n t r o l the d i s s e m i n a t i o n and use of p e r s o n a l i n f o r m a t i o n . At the same time, e f f e c t i v e arguments can be made f o r the use of p e r s o n a l i n f o r m a t i o n i n the p u b l i c i n t e r e s t . Before l o o k i n g i n more d e t a i l at how an e v a l u a t i i o n of competing i n t e r e s t s can & . . . . reasonably be c a r r i e d out, some d i s c u s s i o n of the s i g n i f i c a n c e of m i c r o e l e c t r o n i c technology i s necessary. 4. S i g n i f i c a n c e Of M i c r o e l e c t r o n i c Technology Canadian p e r s o n a l records of occupation a r e , a c c o r d i n g to Newcombe (1977), " i n c r e a s i n g l y c e n t r a l i z e d and ... i n c r e a s i n g l y automated", and he p r e d i c t s t h i s t r e n d w i l l c o n t i n u e . He c i t e s the Unemployment Insurance Commission with machine readable records of a l l people i n the workforce c o n t r i b u t i n g to unemployment insurance; the records show whenever someone i s h i r e d f o r the f i r s t time or changes jo b s . In a d d i t i o n , income tax r e t u r n s show name of employer and some in f o r m a t i o n on o c c u p a t i o n . Newcombe d e s c r i b e s the Canadian v i t a l records system as "probably as good as any i n the world"; i t p r o v i d e s a 65 c e n t r a l i z e d and computerized m o r t a l i t y data base. O n t a r i o H e a l t h Insurance Plan records are a l s o h e l d e l e c t r o n i c a l l y "(Krever, 1980) and i t i s probably safe to say that a l l p r o v i n c i a l h e a l t h insurance plans (medical and h o s p i t a l care) are s i m i l a r l y using e l e c t r o n i c technology. As a r e s u l t , the only b a r r i e r s to l i n k i n g l a r g e amounts of p e r s o n a l i n f o r m a t i o n are o r g a n i z a t i o n a l ( i n c l u d i n g l e g a l , p o l i t i c a l , e t h i c a l and j u r i s d i c t i o n a l ) , not t e c h n o l o g i c a l . As Newcombe (1977) s t a t e s : " f o r the f i r s t time i n h i s t o r y , i t would be p o s s i b l e to f o l l o w -up the whole of the Canadian labour f o r c e , and to monitor the whole of Canadian i n d u s t r y f o r delayed r i s k s . " The s i g n i f i c a n t f a c t emanating from a l l these records being h e l d i n e l e c t r o n i c systems i s that the problems and r i s k s i n herent i n any records systems are heightened. For example: (the f o l l o w i n g p o i n t s are summarized from the Krever Report, 1980) • data h e l d e l e c t r o n i c a l l y are very dense. T h i s permits a records t h i e f to be n o n - s e l e c t i v e . Thousands of records can be s t o l e n (e.g. on d i s k or tape) and reviewed on compatible d e v i c e s elsewhere. Such n o n - s e l e c t i v e access to a l a r g e number of records would be impossible i n a paper system. • T h e f t can be i n v i s i b l e by a c c e s s i n g data on a screen, or t r a n s m i t t i n g data to another t e r m i n a l or f i l e unknown to the guardian of the data, without n e c e s s i t a t i n g t h e f t of a d i s k or tape, and without 66 a l t e r i n g the source d a t a . • Input records, i f not c a r e f u l l y handled and destroyed, can be accessed unknowingly. 1 • Large numbers of c o p i e s of data can be made q u i c k l y on high speed p r i n t e r s or computer output m i c r o f i l m d e v i c e s , which makes copying l a r g e amounts of data much e a s i e r than i s p o s s i b l e with paper r e c o r d s . • Data can be d e l e t e d , change or added to i n v i s i b l y . No t r a c e of o v e r w r i t i n g remains i n e l e c t r o n i c systems; t h i s i s much more d i f f i c u l t i n paper systems. • Linkage a c r o s s d i f f e r e n t data bases (e.g. OHIP and O n t a r i o WCB records) can be achieved. A number of a u t h o r i t i e s have concluded that e l e c t r o n i c technology i n and of i t s e l f does not c r e a t e a p r i v a c y / c o n f i d e n t i a l i t y problem. Westin (1979) s t a t e s that the N a t i o n a l Academy of Sciences P r o j e c t on Computer Databanks 2 r e p o r t e d t h a t , c o n t r a r y to w o r r i e s , c o m p u t e r i z a t i o n of p e r s o n a l data by o r g a n i z a t i o n s had not l e d i n e v i t a b l y to data p r a c t i c e s t hat threaten the p r i v a c y and due process r i g h t s of r e c o r d 1 Krever Commission, 1980: two i n c i d e n t s are r e p o r t e d . D i s c a r d e d OHIP (Ontario H e a l t h Insurance Plan) c l a i m c a r d s , en route to d e s t r u c t i o n , were i n t e r c e p t e d i n an unmutilated form and d e l i v e r e d to the O n t a r i o Medical A s s o c i a t i o n o f f i c e . S i m i l a r l y , i n June, 1978, some 3600 c o p i e s of W e l l e s l e y H o s p i t a l pathology r e p o r t s i n an unmutilated form were blowing throughout Toronto's downtown, having apparently escaped from a p l a s t i c bag which had been loaded onto a d i s p o s a l company's t r u c k . 2 Westin, A.F. and M.A. Baker. Databanks i n a Free S o c i e t y , New York Quadrangle, 1972 c i t e d i n Westin, 1979. 67 s u b j e c t s . S p e c i f i c a l l y , they d i d not f i n d automatic i n c r e a s e s , with the implementation of e l e c t r o n i c data p r o c e s s i n g (EDP), i n the c o l l e c t i o n of more d e t a i l e d and wide-ranging p e r s o n a l i n f o r m a t i o n , or the s h a r i n g of data between o r g a n i z a t i o n s more widely than p r e v i o u s l y , or the c r e a t i o n of s e c r e t or i n a c c e s s i b l e f i l e s where p r e v i o u l s y i n d i v i d u a l r i g h t s of access had e x i s t e d . They d i d f i n d the c r e a t i o n of more up-to-date and complete records on i n d i v i d u a l s ; f a s t e r responses to i n q u i r i e s about persons; more e x t e n s i v e m a n i p u l a t i o n and use of s t o r e d i n f o r m a t i o n ; the c r e a t i o n or expansion of networks f o r data exchange among o r g a n i z a t i o n s w i t h i n p a r t i c u l a r f i e l d s of a c t i v i t y ; and the c r e a t i o n of some l a r g e data bases that would not have been f e a s i b l e without automation. The U.S. P r i v a c y Commission (1977) d e s c r i b e s the impact of the technology t h i s way: Instantaneous a v a i l a b i l i t y of i n f o r m a t i o n on employees at many l o c a t i o n s may c e n t r a l i z e some d e c i s i o n s now made l o c a l l y ; i t c e r t a i n l y w i l l r a i s e the s i g n i f i c a n c e of need-to-know c r i t e r i a i n any p o l i c y governing d i s c l o s u r e of records w i t h i n a f i r m . C e n t r a l i z a t i o n of f i l e s a l s o i n c r e a s e s the c a p a b i l i t y of o r g a n i z a t i o n s to respond to e x t e r n a l requests f o r in f o r m a t i o n about t h e i r employees. ... easy r e t r i e v a l may i n t e n s i f y p r e s s u r e s to make i n f o r m a t i o n a v a i l a b l e f o r purposes other than those f o r which they were o r i g i n a l l y c o l l e c t e d . S i m i l a r l y , the Krever Report (1980) s t a t e s Computers themselves are not the problem; they have simply made the problem more c l e a r , more immediate, a f f e c t i n g more of us, and p u t t i n g more at stake.... computers b r i n g i n t o s t a r k r e l i e f the problems faced i n any records system. I t j u s t happens that the very e f f i c i e n c y and nature of computer systems makes these 6 8 problems more e v i d e n t . Once the r e s p o n s i b i l i t y to p r o t e c t p e r s o n a l i n f o r m a t i o n i s reco g n i z e d , computer data systems can be made very secure through, f o r example, use of passwords, separate f i l e s f o r v a r i o u s p a r t s of the i n f o r m a t i o n , and time and e r r o r t o l e r a t i o n l i m i t s . T h i s kind of s e c u r i t y may surpass the t r a d i t i o n a l l o c k e d door p r o t e c t i o n of paper data systems. 5. THE UNIQUE PERSONAL IDENTIFIER ISSUE The i s s u e of a unique per s o n a l i d e n t i f i e r i s u s e f u l to d i s c u s s at t h i s p o i n t because i t i n v o l v e s many of the same concerns that computerized data bases r a i s e . The purpose of a system of unique (one i n a l i f e t i m e ) p e r s o n a l i d e n t i f i e r s i s to enable f i l e s from d i f f e r e n t sources to be l i n k e d more a c c u r a t e l y and r a p i d l y , whether f o r re s e a r c h or a d m i n i s t r a t i v e uses ( K r e v e r , 1 9 8 0 ) . Inaccurate l i n k i n g of f i l e s can r e s u l t i n problems f o r i n d i v i d u a l s i n c o r r e c t l y i d e n t i f i e d (e.g. d e n i a l of c r e d i t , employment r e f u s a l ) as w e l l as d i s t o r t r e s e a r c h r e s u l t s , p a r t i c u l a r l y a problem where smal l numbers of cases or exposures are i n v o l v e d . The concept of a p e r s o n a l r e g i s t e r , p e r m i t t i n g a mu l t i t u d e of l i f e events on any i n d i v i d u a l t o be r e s u r r e c t e d economically and e a s i l y causes c o n t r o v e r s y however. As Krever ( 1 9 8 0 ) s t a t e s : "The problem with r e c o r d l i n k a g e i s a fe a r that government w i l l know e v e r y t h i n g , or can know e v e r y t h i n g about a l l the members of s o c i e t y . " 69 P o t e n t i a l l y , such access to i n f o r m a t i o n c o u l d be abused. Westin (1976) s t a t e s "What we conclude i s that the main problem today in computerized h e a l t h data systems i s p o t e n t i a l harm ... these p o s s i b i l i t i e s of misuse have not been taken i n t o account and d e a l t with e f f e c t i v e l y by the managers of such computerized systems"(emphasis i n o r i g i n a l ) . T h i s l a r g e r s o c i a l i m p l i c a t i o n i s a l s o e vident i n Westin (1979) : ... s o c i e t i e s with regard f o r i n d i v i d u a l r i g h t s can shape the f u t u r e uses of technology by powerful o r g a n i z a t i o n s , rather than to allow machine and b u r e a u c r a t i c e f f i c i e n c i e s to misshape o r g a n i z a t i o n a l l i f e along non-democratic pathways. Much i s at stake i n our e l e c t r o n i c c i v i l i z a t i o n . Krever (1980) r e p o r t s that "West Germany,..., i n 1977 withdrew i t s plans to introduce a unique p e r s o n a l i d e n t i f i e r " as a r e s u l t of these kinds of p u b l i c concerns, and that the U n i t e d St a t e s " r e c e n t l y r e j e c t e d a p r o p o s a l to use the s o c i a l s e c u r i t y number on census forms to f a c i l i t a t e l i n k a g e " f o r the same reasons. Linkage of f i l e s i s p o s s i b l e without a unique p e r s o n a l i d e n t i f i e r . The obvious example i s the system i n use at S t a t i s t i c s Canada, using a group of i d e n t i f y i n g c h a r a c t e r i s t i c s which r e s u l t s i n f a s t , r e l i a b l e , inexpensive and a c c u r a t e l i n k a g e (See d i s c u s s i o n i n chapter one above). I t does r e q u i r e that more i d e n t i f y i n g data be s t o r e d than would be r e q u i r e d i n a unique p e r s o n a l i d e n t i f i e r system, and hence i s more c o s t l y . I t a l s o r e t a i n s the p o s s i b i l i t y of i n a c c u r a t e l i n k a g e s , which i s 70 l e s s l i k e l y with a unique i d e n t i f i e r . In summary, the problems r a i s e d by the concept of a unique p e r s o n a l i d e n t i f i e r are not s p e c i f i c a l l y t i e d to the implementation of the program i t s e l f ; p o t e n t i a l f o r abuse of p e r s o n a l records by l i n k i n g independent s e t s of records e x i s t s a l r e a d y , as i s w e l l documented i n the Krever r e p o r t (1980). The problem i s t h a t , l i k e computerized data bases, the use of unique p e r s o n a l i d e n t i f i e r s may permit f a s t e r , e a s i e r , and l a r g e r s c a l e abuses. In other words, the technology of a unique p e r s o n a l i d e n t i f i e r simply puts the problem of improper l i n k a g e s i n a c l e a r e r l i g h t and makes i t "more immediate, a f f e c t i n g more of us, and p u t t i n g more at stake", to quote Krever's (1980) comments on computer technology once a g a i n . The s i g n i f i c a n c e of both the unique i d e n t i f i e r and computerized data bases i s not the technology i t s e l f i n e i t h e r case, but what i n f o r m a t i o n i s h e l d u sing them and the nature and q u a l i t y of the c o n t r o l s over t h e i r use. 6. Some Proposals For S o l u t i o n s To The Technology  Problems No one proposes not u s i n g computerized data systems as a s o l u t i o n to the problems l i s t e d above. I t i s c l e a r that e l e c t r o n i c technology i s here to s t a y . P r o p o s a l s f o r d e a l i n g with the r i s k s of l a r g e , c e n t r a l i z e d data systems h i g h l i g h t e d by the impact of computer technology are two pronged: '! 71 • f a i r i n f o r m a t i o n s e l e c t i o n : review of data c o l l e c t e d or to be c o l l e c t e d and h e l d to ensure that i t i s necessary and r e l e v a n t to the purpose for which i t i s c o l l e c t e d , a c c u r a t e , complete and t i m e l y . I f i t does not meet these c r i t e r i a i t should not be h e l d . • secure i n f o r m a t i o n management : ensure the s e c u r i t y and c o n f i d e n t i a l i t y of records by e s t a b l i s h i n g the necessary a d m i n i s t r a t i v e , t e c h n i c a l and p h y s i c a l safeguards i n the re c o r d s system. These p r i n c i p l e s are i n c o r p o r a t e d i n the f o l l o w i n g r e p o r t s : U.S. P r i v a c y Act of 1974 (su b s e c t i o n s 3 ( e ) ( 1 ) , (5) and (10)) (U.S. P r i v a c y P r o t e c t i o n Study Commission, 1977) and r e i t e r a t e d i n the 1977 U.S. Government r e p o r t of the P r i v a c y P r o t e c t i o n Study Commission; Records, Computers and the Rights of C i t i z e n s : the Report of the S e c r e t a r y ' s A d v i s o r y Comittee on Automated Per s o n a l Data Systems, U.S. Department of H.E.W., 1973; E t h i c a l C o n s i d e r a t i o n s i n Research I n v o l v i n g Human Su b j e c t s , Report Number 6, Me d i c a l Research C o u n c i l of Canada (1978) (addresses second i s s u e above o n l y ) ; Computer Science and Technology: Computers, Personnel A d m i n i s t r a t i o n , and C i t i z e n R i g h t s , Westin, A. f o r U.S. Department of Commerce, 1979; 72 the Krever Commission r e p o r t , 1980 (recommendations 36-42) . T h i s l i s t i s not n e c e s s a r i l y e x h a u s t i v e . A s l i g h t l y d i f f e r e n t but p o t e n t i a l l y u s e f u l f o r m u l a t i o n of of b a s i c p r i n c i p l e s i s summarized by R e i n e r t (1981) i n the f o l l o w i n g way: The [U.S.] P r i v a c y Commission e s t a b l i s h e d three general p o l i c y g o a l s : 1) minimizing i n t r u s i v e n e s s 2) maximizing f a i r n e s s and 3) c r e a t i n g l e g i t i m a t e e x p e c t a t i o n s of c o n f i d e n t i a l i t y . These goals correspond roughly to three stages of the r e c o r d keeping p r o c e s s : 1) c o l l e c t i o n 2) use and 3) d i s s e m i n a t i o n of i n f o r m a t i o n . E s t a b l i s h i n g and m a i n t a i n i n g these p r i n c i p l e s i n any records system r e q u i r e s a commitment of time and money. Krever notes that the l a c k of d e t e c t i o n of v i o l a t i o n s of the O n t a r i o h e a l t h data systems i s not n e c e s s a r i l y good: From the data guardian's p o i n t of view t h i s [ l a c k of d e t e c t i o n of system v i o l a t i o n s ] may be c o n s i d e r e d l e s s than lucky s i n c e the absence of documented breaching of the s e c u r i t y system c r e a t e s the f e e l i n g t h a t the i s s u e i s exaggerated, that the c o s t i s not worth i t , or that the p r e c a u t i o n s taken are adequate. To a c e r t a i n extent we have been l u l l e d i n t o a f a l s e sense of s e c u r i t y . and Only i f the r e s p o n s i b i l i t y of the data guardian i s r e c o g n i z e d , however, w i l l the c o s t of i n s t i t u t i n g s e c u r i t y measures seem j u s t i f i e d . (Krever, 1980) With r e s p e c t to the unique p e r s o n a l i d e n t i f i e r , i t i s not a 73 given that the technology w i l l be i n t r o d u c e d . Opinion i s d i v i d e d on the n e c e s s i t y of such a system and may i n f a c t be l e a n i n g away from s u p p o r t i n g i t s i n s t i t u t i o n (see the d i s c u s s i o n above, s p e c i f i c a l l y recent a c t i o n s of West Germany and the USA). Regardless of whether or not unique i d e n t i f i e r s are the mechanism f o r r e c o r d l i n k a g e however, records are and w i l l be l i n k e d and s o l u t i o n s are aimed p r i m a r i l y at a d d r e s s i n g a u t h o r i z a t i o n to l i n k f i l e s r a t h e r than use of unique i d e n t i f i e r s . Sweden e s t a b l i s h e d the Data I n s p e c t i o n Board i n 1973 which " r e g u l a t e s the c o l l e c t i o n and d i s s e m i n a t i o n of data s t o r e d on computers" (Krever, 1980). These r e s p o n s i b i l i t i e s i n c l u d e how a data bank i s maintained and to whom in f o r m a t i o n may be disseminated. Krever (1980) a l s o s t a t e s " S i m i l a r data p r o t e c t i o n agencies have been e s t a b l i s h e d or recommended i n France, West Germany, H o l l a n d , and the U n i t e d Kingdom as a p r e r e q u i s i t e to implementing a unique i d e n t i f i e r system." Krever recommends a s i m i l a r process f o r O n t a r i o i f a unique i d e n t i f i e r i s adopted, s t a t i n g "The primary and c r u c i a l f u n c t i o n of a c e n t r a l agency would be to approve data l i n k a g e . In many r e s p e c t s t h i s f u n c t i o n resembles the r o l e of the human experimentation committees ... d e a l i n g with r e s e a r c h , except t h a t the procedures would apply to any group or i n d i v i d u a l , i n c l u d i n g government, r e q u e s t i n g l i n k a g e of data." Given that systems e x i s t to l i n k records a c c u r a t e l y and e f f i c i e n t l y without the a i d of a unique i d e n t i f i e r , the q u e s t i o n remains whether the body Krever recommends should be e s t a b l i s h e d whether or not : unique p e r s o n a l i d e n t i f i e r s are i n t r o d u c e d . 74 7. S p e c i a l Issues R e l a t i n g To Employer-held Records Employer-held p e r s o n a l records c o n s i s t of personnel r e c o r d s , c o n t a i n i n g such i n f o r m a t i o n as p e r s o n a l c h a r a c t e r i s t i c s (e.g. name, age, sex, address, b i r t h date, m a r i t a l s t a t u s , dependents, e t c . ) , r e c r u i t i n g and h i r i n g data (e.g. e d u c a t i o n , employment, medical, m i l i t a r y , c o n v i c t i o n h i s t o r y ; r e f e r e n c e s , t e s t s c o r e s , i n t e r v i e w d a t a ) , work and e d u c a t i o n a l h i s t o r y w i t h i n the o r g a n i z a t i o n , and b e n e f i t plans e n r o l l e d i n and used (from Westin, 1979), and o c c u p a t i o n a l h e a l t h and s a f e t y i n f o r m a t i o n , i n c l u d i n g medical exam r e s u l t s , compensation c l a i m s , r e s u l t s of any t e s t s done or exposure m o n i t o r i n g . Westin (1979) makes the case that employee records are very s i m i l a r to education and h e a l t h care records because of the c o n t i n u i n g r e l a t i o n s h i p and the r e c o g n i z e d r i g h t f o r the employer to r e c o r d p e r s o n a l i n f o r m a t i o n e x t e n s i v e l y . Westin c o n t r a s t s these kinds of records to one-time c o l l e c t i o n of i n f o r m a t i o n s i t u a t i o n s , such as job a p p l i c a t i o n s , a p p l i c a t i o n s f o r c r e d i t or l i c e n c e s . R e i n e r t (1981) s t a t e s "The [U.S.] P r i v a c y Commission found that employment records were the most d i v e r s e , perhaps the most important, and i n many ways the most problematic of the r e c o r d keeping systems i t s t u d i e d . " 1 R e i n e r t a t t r i b u t e s t h i s importance and d i v e r s i t y to the c e n t r a l r o l e of employment i n people's l i v e s and the d i v e r s i t y of 1 R e i n e r t (1981) c i t e s the statement of R. P l e s s e r , former General Counsel, P r i v a c y P r o t e c t i o n Study Commission at the [U.S.] Department of Labour Hearings on Workplace P r i v a c y , 1980. T r a n s c r i p t s a v a i l a b l e at Department of Labour, Washington, D.C, 45 F e d e r a l R e g i s t e r 8780 (1980). 7 5 management f u n c t i o n s f o r which records can be used. Researchers may have an i n t e r e s t i n access to employer-held records f o r a number of reasons. The U.S. N a t i o n a l I n s t i t u t e on O c c u p a t i o n a l Safety and Health (NIOSH) has argued f o r acc e s s . They s t a t e : In the o c c u p a t i o n a l h e a l t h and s a f e t y s e t t i n g , data kept by the employers are of importance to the h e a l t h of i n d i v i d u a l s as a whole. N o n - d i s c l o s u r e of t h i s data to the employees and q u a l i f i e d r e s e a r c h e r s cannot be m o r a l l y or e t h i c a l l y defended ... Exposure, demographic and medical data provide v a l u a b l e i n f o r m a t i o n i n determining the dose-response h e a l t h e f f e c t s of o c c u p a t i o n a l exposures on workers, dev e l o p i n g standards, and e s t a b l i s h i n g p r e v e n t i v e measures. ... The data needed ... i n c l u d e exposure data, medical i n f o r m a t i o n , work h i s t o r y i n f o r m a t i o n and demographic data c o l l e c t e d by the employers. 1 Debate rages on two f r o n t s on the i s s u e of employer-held r e c o r d s : how much i n f o r m a t i o n should be h e l d and who should have access to i t . These q u e s t i o n s are i n t e r r e l a t e d , but f o r s i m p l i c i t y w i l l be d e a l t with c o n s e c u t i v e l y . The debate on whether employers should h o l d the e x t e n s i v e p e r s o n a l i n f o r m a t i o n they f r e q u e n t l y do i s f i r e d by concern about abuse of such i n f o r m a t i o n by employers. R e i n e r t (1981) c l a s s i f i e s p o t e n t i a l employer abuse i n three c a t e g o r i e s : i . data g a t h e r i n g which i s unduly i n t r u s i v e due to the method of s o l i c i t a t i o n (e.g. l i e d e t e c t o r t e s t s ) , the type of i n f o r m a t i o n sought (e.g. p o l i t i c a l or 1 (*) NIOSH testimony on OSHA r e g u l a t i o n s t i t l e d , 'Access to Employer Exposure and Med i c a l Records', November, 1979 c i t e d i n Rose, 1981. 7 6 r e l i g i o u s b e l i e f , sexual o r i e n t a t i o n ) or the absence of informed employee consent about whether to d i s c l o s e the i n f o r m a t i o n (e.g. employer o b t a i n i n g i n f o r m a t i o n under f a l s e pretenses or by p r i v a t e i n v e s t i g a t i o n ) ; i i . u n f a i r i n f o r m a t i o n use , which "occurs whenever perso n a l i n f o r m a t i o n i s used as the b a s i s f o r an adverse d e c i s i o n about an i n d i v i d u a l i n a manner to which the i n d i v i d u a l d i d not consent when d i s c l o s i n g " . R e i n e r t notes " C u r r e n t l y , the most troublesome form of such d i s c r i m i n a t i o n i n v o l v e s medical records which are used to screen out a p p l i c a n t s who are p h y s i c a l l y capable of performing jobs ..." ( R e i n e r t , 1981); i i i . breach of c o n f i d e n t i a l i t y , c o n s i s t i n g of "... d i s c l o s u r e of employee i n f o r m a t i o n to a t h i r d p a r t y by the employer without n o t i c e to and consent of the employee. ... [ T h i s ] may be the most s e r i o u s form of p r i v a c y abuse, because i t v i o l a t e s such e x p e c t a t i o n s of p r i v a c y and can l e a d to pe r s o n a l or economic harm to the employee." ( R e i n e r t , 1981) These types of abuse are a l l r e l a t e d to a p a r t i c u l a r kind of use of i n f o r m a t i o n , that i s , use of the p e r s o n a l data c o l l e c t e d to make d e c i s i o n s which may a f f e c t the i n d i v i d u a l who the data concerns. As R e i n e r t has noted, an important area of p o t e n t i a l abuse i n v o l v e s employer-held medical r e c o r d s . A l l authors are vehement that p e r s o n a l medical i n f o r m a t i o n h e l d by the employer's o c c u p a t i o n a l h e a l t h department i s open to abuse i f . i t 77 i s made a v a i l a b l e to non-medical employees i n a p o s i t i o n t o make d e c i s i o n s a f f e c t i n g the i n d i v i d u a l s on whom in f o r m a t i o n i s h e l d . M e d i c a l s t a f f are d i r e c t e d to ensure the c o n f i d e n t i a l i t y of such p e r s o n a l medical i n f o r m a t i o n . Krever (1980) s t a t e s that the r e s u l t s of an examination of a p r o s p e c t i v e (or present) employee should be communicated to the employer only i n terms of " f i t n e s s to work". Presumably any l i m i t a t i o n s would be expressed i n terms of f i t n e s s t o ho l d p a r t i c u l a r jobs and not o t h e r s . T h i s of course r e q u i r e s that the medical s t a f f be f a m i l i a r with the s p e c i f i c demands of the v a r i o u s j o b s . Medical s t a f f are a l s o r e s p o n s i b l e to a l e r t management to any source of hazard i n the workplace which i s causing or has p o t e n t i a l to cause h e a l t h problems. Unless t h i s a d m i n s t r a t i v e d i s t i n c t i o n can be made w i t h i n the employer's o p e r a t i o n , then i t i s not j u s t i f i a b l e to ho l d p e r s o n a l medical data. T h i s d i s t i n c t i o n i s supported by the code of e t h i c s of the American O c c u p a t i o n a l Medicine A s s o c i a t i o n , which s t a t e s that a p h y s i c i a n p r o v i d i n g o c c u p a t i o n a l medical s e r v i c e s t r e a t s as c o n f i d e n t i a l whatever i s lear n e d about i n d i v i d u a l s served, r e l e a s i n g i n f o r m a t i o n only when r e q u i r e d by law or by o v e r - r i d i n g p u b l i c h e a l t h c o n s i d e r a t i o n s , or to other p h y s i c i a n s at the request of the i n d i v i d u a l . . . ; and should recognize that employers are e n t i t l e d to counse l about the medical f i t n e s s of i n d i v i d u a l s i n r e l a t i o n to work, but are not e n t i t l e d to a d i a g n o s i s or d e t a i l s of a s p e c i f i c n a t u r e . 1 1 P o i n t 7, Code of E t h i c a l Conduct f o r P h y s i c i a n s P r o v i d i n g O c c u p a t i o n a l Medical S e r v i c e s , AOMA, 1976 c i t e d i n Rose, 1981. 78 The concern of trade unions and other i n v e s t i g a t o r s i s that t h i s standard of p r a c t i c e i s a very d e l i c a t e one, given that the o c c u p a t i o n a l medical s e r v i c e s s t a f f are employees a l s o , not an independent t h i r d p a r t y . Krever (1980) s t a t e s These h e a l t h p r o f e s s i o n a l s face a c o n f l i c t between t h e i r duty with respect to the requirements of c o n f i d e n t i a l i t y of p a t i e n t i n f o r m a t i o n and t h e i r duty to obey the i n s t r u c t i o n s of t h e i r employers. ... T h i s i s a s p e c i a l problem f o r the o c c u p a t i o n a l h e a l t h nurse who i s not p e r c e i v e d by our s o c i e t y to have as h i g h a s t a t u s as the p h y s i c i a n , and, on the a v a i l a b l e evidence, i s t h e r e f o r e more l i k e l y to be s u b j e c t to pressure from the employer to r e v e a l c o n f i d e n t i a l i n f o r m a t i o n . Krever r e p o r t s testimony from the personnel manager of Dare Foods L t d . to support t h i s , as w e l l as by i n d i v i d u a l o c c u p a t i o n a l h e a l t h nurses and t h e i r A s s o c i a t i o n . He a l s o c i t e s a number of a r b i t r a t i o n cases where p h y s i c i a n s passed on to the employer medical i n f o r m a t i o n without the consent of the employee i n q u e s t i o n . Krever concludes by s t a t i n g t h at a l l employees, i n c l u d i n g f i r s t a i d a t t e n d e n t s and c l e r k s h a n d l i n g and s t o r i n g r e c o r d s , have a r e s p o n s i b i l i t y to r e s p e c t the c o n f i d e n t i a l i t y of medical i n f o r m a t i o n , a r e s p o n s i b i l i t y which transcends the duty to obey i n s t r u c t i o n s to r e v e a l i n f o r m a t i o n h e l d i n c o n f i d e n c e . T h i s supports the p o s i t i o n that medical records should not be a v a i l a b l e f o r input to management decision-making. Access to union-held records has not been addressed because, as was demonstrated i n chapter 2 , unions simply do not h o l d e x t e n s i v e p e r s o n a l i n f o r m a t i o n on t h e i r members. If and when unions begin to c o l l e c t p e r s o n a l i n f o r m a t i o n comparable to 79 that h e l d by employers, e i t h e r f o r a d m i n i s t r a t i v e purposes or as the r e s u l t of investment i n h e a l t h and s a f e t y programs run by the union, then the issu e s d i s c u s s e d above regarding employer r e s p o n s i b i l i t i e s w i l l apply to unions as w e l l . Workers' Compensation c l a i m s i n f o r m a t i o n h e l d by the p r o v i n c i a l boards i s a l s o s u b j e c t to the same requirements of c o n f i d e n t i a l i t y d e s c r i b e d above. Since the WCB i s a separate and quasi-governmental agency, such p r a c t i c e s appear to have been e s t a b l i s h e d and re s p e c t e d . P u b l i c d i s c u s s i o n has been aroused r e c e n t l y however over the is s u e of a c l a i m a n t ' s l a c k of access to h i s / h e r own r e c o r d s . Steeves (1982) r e p o r t s on a landmark d e c i s i o n i n the B.C.Court of Appeal i n J u l y 1981 which d i r e c t e d that workers a p p e a l i n g board d e c i s i o n s must be pro v i d e d access to t h e i r f i l e s i n order to be given f a i r o p p o r t u n i t y to c o r r e c t or c o n t r a d i c t statements or evidence used i n d e c i s i o n s „ a f f e c t i n g him/her. The i m p l i c a t i o n s of t h i s d e c i s i o n f o r WCB p r a c t i c e s are s t i l l being determined; an area of p a r t i c u l a r d i s p u t e i s whether the employer r e q u i r e s the worker's consent i n order to see a cl a i m s f i l e which i s under appeal. So f a r , we have d i s c u s s e d only a d m i n i s t r a t i v e uses of pe r s o n a l i n f o r m a t i o n . As Newcombe (1977) s t a t e s I d e a l l y , a c l e a r d i s t i n c t i o n ought to be made between the use of records f o r p u r e l y s t a t i s t i c a l purposes, which a f f e c t no one d i r e c t l y , and t h e i r use by a d m i n i s t r a t o r s to a r r i v e at d e c i s i o n s capable of a f f e c t i n g the i n d i v i d u a l . The two s o r t s of a c t i v i t y are q u i t e d i f f e r e n t , even where the same records happen to be employed f o r both purposes. Once t h i s d i s t i n c t i o n i s made, i t i s p o s s i b l e to focus 80 on the q u e s t i o n of importance f o r t h i s paper, that i s , access to records by r e s e a r c h e r s f o r non-adminstrative uses. 8. G u i d e l i n e s For A Bal a n c i n g Of I n t e r e s t s Researchers may be i n t e r e s t e d i n nominal r o l l data and/or more s p e c i f i c exposure i n f o r m a t i o n (jobs h e l d , d u r a t i o n , environmental monitoring r e c o r d s , etc.) or medical i n f o r m a t i o n . Newcombe (1977) recounts, as an example, a s t o r y where c o n f i d e n t i a l i t y i s given as a reason by an employer to block researcher access to such r e c o r d s . Newcombe i s c l e a r l y concerned t h a t , i n the name of p r o t e c t i n g c o n f i d e n t i a l i t y of reco r d s , important hazards w i l l not be i d e n t i f i e d . T h i s concern i s echoed by Ken V a l e n t i n e (1977), D i r e c t o r of Saf e t y and Hea l t h f o r the Canadian N a t i o n a l o f f i c e of the Un i t e d Steelworkers of America. V a l e n t i n e s t a t e s "... I suggest too many people use the word ' c o n f i d e n t i a l i t y ' when they r e a l l y mean se c r e c y . They j u s t don't want s o c i e t y , or t h e i r workers, to be aware of the f u l l extent of hazards on the job." What s o l u t i o n s have been put forward to balance the concern f o r c o n f i d e n t i a l i t y with the p u b l i c i n t e r e s t served by re s e a r c h i n access to p e r s o n a l records? A common g u i d e l i n e (Westin,1979; U.S. P r i v a c y Commission,1977; Reinert,1981; A h r e n s , l 9 8 l ; Fredgant,1981) proposes employee consent and/or advisement f o r a l l d i s c l o s u r e s of i n f o r m a t i o n . U.S. Oc c u p a t i o n a l S a f e t y and Hea l t h Act (OSHA) 81 1979 r e g u l a t i o n s p r o v i d e that access to employer-held medical and exposure records i s a v a i l a b l e to the i n d i v i d u a l workers themselves, to t h e i r d e s i g n a t e d r e p r e s e n t a t i v e s (e.g. trade union r e p r e s e n t a t i v e s ) as long as w r i t t e n consent i s pr o v i d e d by the worker whose r e c o r d i s to be examined, and to OSHA and NIOSH without consent from the i n d i v i d u a l ( s ) i n v o l v e d (Rose, 1981). There appears to be trade union support f o r t h i s arrangement 1 . S p e c i f i c o p p o s i t i o n was v o i c e d by an employer's a s s o c i a t i o n quoted by Rose (1981): To be meaningful the consent r e q u i r e d must be informed. ... The present r e g u l a t i o n makes a b s o l u t e l y no p r o v i s i o n f o r consent with r e s p e c t to request f o r records by OSHA and NIOSH, and such a v e r s i o n i s t o t a l l y i n c o n s i s t e n t with the p r i v a c y i n t e r e s t s of employees. ... the f a i l u r e of some employers to re s p e c t the p r i v a c y of some employees i s no reason f o r a s i m i l a r abuse on the p a r t of OSHA and NIOSH, much l e s s the type of massive i n t r u s i o n s to p e r s o n a l p r i v a c y and wholesale breach of c o n f i d e n t i a l i t y inherent i n t h i s r e g u l a t i o n . ... No matter how compelling the need may appear f o r government to o b t a i n the data on o c c u p a t i o n a l h e a l t h and s a f e t y i s s u e s i n order to develop standards a p p l i c a b l e to the workplace, ... , the records c o u l d be used f o r enforcement purposes. ... The employers had not su b j e c t e d t h e i r r e c o r d keeping p r a c t i c e s to the type of p r o t e c t i o n s that would be i n d i c a t e d i f the employer knew that the records c o u l d be used, a g a i n s t him by OSHA f o r purposes of the enforcement of the A c t . 2 1 U.S. Steelworkers of America B r i e f on OSHA-NIOSH Access to Employee Exposure and Medical Records, March 1979 i n Rose, 1981. 2 Motor V e h i c l e Manufacturers A s s o c i a t i o n of the U.S., Inc., March 1979 i n Rose, 1981. 82 E p i d e m i o l o g i s t s have argued that r e q u i r i n g consent w i l l c e r t a i n l y make re s e a r c h d i f f i c u l t and p o t e n t i a l l y impossible (Gordis and Gold, 1980; NIOSH testimony, November, 1979 i n Rose, 1981; Krever,1980). These d i f f i c u l t i e s a r i s e i n a number of ways: the r e s e a r c h q u e s t i o n may a r i s e long a f t e r many of the employees have l e f t the employer, making consent d i f f i c u l t or impossible to o b t a i n ; i t may be necessary to have some inf o r m a t i o n without consent i n order to i d e n t i f y the people who need to be c o n t a c t e d about co n s e n t i n g to p a r t i c i p a t e f u r t h e r ; where s u f f i c i e n t data are a l r e a d y i n hand, the e f f o r t and c o s t s of o b t a i n i n g consent f o r data used from each s u b j e c t may be p r o h i b i t i v e ; even i f consent was sought, the v o l u n t e e r nature of the consenting p o p u l a t i o n might compromise the r e s u l t s . Krever (1980), i n weighing the i s s u e , emphasized the f a c t that " r e s e a r c h i n f o r m a t i o n , unless i t i s abused-, i s not used to make d e c i s i o n s about an i n d i v i d u a l , such as those denying or c o n f e r r i n g a b e n e f i t . " He recommended that medical i n f o r m a t i o n be made a v a i l a b l e without the consent of the p a t i e n t to r e s e a r c h e r s where the i n f o r m a t i o n i s i n d i s p e n s i b l e to the p r o j e c t , the p r o j e c t i s of s u f f i c i e n t importance to j u s t i f y the breach of p r i v a c y (as determined by a human experimentation committee) and that adequate p r o v i s i o n s are made f o r maintenance of the c o n f i d e n t i a l i t y of the data. The M e d i c a l Research C o u n c i l of Canada (MRC) took a s i m i l a r p o s i t i o n : The i n c r e a s i n g l y frequent use, f o r r e s e a r c h , of medical or p e r s o n a l records maintained i n c e n t r a l r e g i s t r i e s ... r a i s e s the q u e s t i o n of 83 c o n f i d e n t i a l i t y . The p r i n c i p l e s governing the use of such data must take i n t o account the f a c t that i t may be impossible to get p r i o r consent f o r use of these records i n every i n s t a n c e . ... The u l t i m a t e r e s p o n s i b i l i t y f o r the c o n t r o l of records must l i e with the d i r e c t o r of the research group. ... Every e f f o r t should be made to enforce the s e c u r i t y of records and to r e g u l a t e t h e i r storage and use. (MRC, 1978) The new Canadian Human Righ t s Act a l s o supports t h i s p o s i t i o n . I t s p e c i f i e s procedures f o r consent and access to i n d i v i d u a l p e r s o n a l data h e l d by the f e d e r a l government. Consent i s not r e q u i r e d from the i n d i v i d u a l s where the use of the data i s f o r s t a t i s t i c a l and r e s e a r c h purposes only (Rowebottom, 1979). Rowebottom (1979) comments that these p r o v i s i o n s resemble the U.S. P r i v a c y Act "but because of the sharp d i s t i n c t i o n between a d m i n i s t r a t i v e and s t a t i s t i c a l use of data the Canadian Act w i l l f a c i l i t a t e r a t h e r than i n h i b i t r e s e a r c h . " Where consent i s not p r a c t i c a b l e , Krever (1980) n e v e r t h e l e s s urges r e s e a r c h e r s to make the s u b j e c t and the p u b l i c aware of what uses the i n f o r m a t i o n accessed i s put and what p r o t e c t i o n i s given to the i n f o r m a t i o n h e l d . Although Krever's remarks are addressed s p e c i f i c a l l y to the r e l e a s e of medical i n f o r m a t i o n from medical i n s t i t u t i o n s , they are c l e a r enough i n the p r i n c i p l e s they express to be a p p l i e d to employer-h e l d medical and personnel r e c o r d s . The MRC wording presented above concurs with Krever's recommendations and i s not l i m i t e d 84 in i t s a p p l i c a t i o n . The c o n c l u s i o n s from t h i s review of the c o n f i d e n t i a l i t y i s s u e can be summarized in a few p r i n c i p l e s and the caveat that the a p p l i c a t i o n of these p r i n c i p l e s may not always be easy. The p r i n c i p l e s are these: i . Records should be r e l e v a n t , a c c u r a t e , and t i m e l y and the s u b j e c t of the r e c o r d should be aware of what i s h e l d , how i t i s used, and should be a b l e to review, copy and e i t h e r c o r r e c t or add a statement i f he/she c o n t e s t s i n f o r m a t i o n h e l d . i i . D i s c l o s u r e of any p e r s o n a l i n f o r m a t i o n to a t h i r d p a r t y should, as a r u l e , be only with the informed consent of the s u b j e c t of the r e c o r d . Research uses of records can be an e x c e p t i o n to t h i s r u l e where a l l of the f o l l o w i n g c r i t e r i a are met: • i t i s not p r a c t i c a l to o b t a i n consent from each s u b j e c t ; • the i n f o r m a t i o n i s i n d i s p e n s i b l e to the r e s e a r c h p r o j e c t ; • the p r o j e c t i s of s u f f i c i e n t importance to j u s t i f y the breach of p r i v a c y ; 1 The e v a l u a t i o n of s i g n i f i c a n c e of the p r o j e c t ( i . e . the p u b l i c i n t e r e s t ) i n r e l a t i o n to the i n d i v i d u a l i n t e r e s t i n p r i v a c y and c o n f i d e n t i a l i t y should not be i n the hands of r e s e a r c h e r s a l o n e . Any d e c i s i o n r e g a r d i n g r e c o r d l i n k a g e should be made by a board which r e p r e s e n t s a spectrum of s o c i a l i n t e r e s t s (see Krever,1980 and h i s d i s c u s s i o n of the Swedish Data I n s p e c t i o n Board). 85 • no i n f o r m a t i o n made a v a i l a b l e to the r e s e a r c h p r o j e c t i s used i n any way which w i l l i d e n t i f y an i n d i v i d u a l , or permit any impact f o r good or i l l on any of the i n d i v i d u a l s on whom inf o r m a t i o n i s a c q u i r e d , unless t h e r e i s c r i t i c a l medical i n f o r m a t i o n a f f e c t i n g the l i f e or h e a l t h of the i n d i v i d u a l on the b a s i s of which a c t i o n should be taken; • the data i s h e l d i n a way which i s a d m i n i s t r a t i v e l y , t e c h n i c a l l y and p h y s i c a l l y secure i n order to assure c o n f i d e n t i a l i t y . • C. POLICY OPTIONS S e c t i o n B above presented p o s s i b l e mechanims f o r improving long term r e t e n t i o n of employment nominal r o l l i n f o r m a t i o n . T h i s s e c t i o n w i l l attempt b r i e f l y to i d e n t i f y probable routes f o r improvement given the s o c i a l - p o l i t i c a l context i n B.C. The model used to evaluate the v a r i o u s mechanisms i s drawn from H a l l et al.,1975. They propose three main c r i t e r i a a g a i n s t which any i s s u e i s assessed i n determining the p r i o r i t y i t i s given i n the decision-making arena. These c r i t e r i a are l e g i t i m a c y , f e a s i b i l i t y and support. They propose t h a t any i s s u e can be scored a g a i n s t each of these items and i t s l i k e l y p r o gress estimated. 86 1. The C o l l e c t i v e B a r g a i n i n g Arena About f o r t y - f i v e per cent of B.C. workers are covered by c o l l e c t i v e agreements ( B r i t i s h Columbia, 1982). R e q u i r i n g long term r e t e n t i o n of nominal r o l l i n f o r m a t i o n i s h i g h l y f e a s i b l e i n the sense that f a i r l y s p e c i f i c c o n t r a c t language can be imagined which would cover the f a i r c o l l e c t i o n and storage (by e i t h e r or both p a r t i e s , or a t h i r d p a r t y ) of such i n f o r m a t i o n i n an e f f i c i e n t manner. Resources r e q u i r e d are not p a r t i c u l a r l y l a r g e . A d m i n i s t r a t i v e c a p a b i l i t i e s f o r c a r r y i n g out the process e x i s t both on the employer's s i d e and to a l e s s e r extent on the union's. The o n l y weak area with respect to f e a s i b i l i t y i s the c o l l a b o r a t i o n between employer and union such a c o n t r a c t c l a u s e would r e p r e s e n t . The p u b l i c tone of labour r e l a t i o n s i n t h i s p r o v i n c e i s p r i m a r i l y a d v e r s a r i a l and the e x p r e s s i o n of common i n t e r e s t i n long term h e a l t h i s s u e s and p o t e n t i a l c o o p e r a t i o n i n the use of the data may appear to be i n c o n t r a s t to the p r e v a i l i n g c l i m a t e . In f a c t , however, there are examples of c o l l a b o r a t i o n between unions and management on h e a l t h i s s u e s ( f o r example, j o i n t h e a l t h s t u d i e s , employee a s s i s t a n c e programs) and t h e r e f o r e the f e a s i b i l i t y of t h i s o p t i o n i s i n f a c t q u i t e h i g h . Legitimacy concerns the q u e s t i o n " i s t h i s an i s s u e with which the p a r t y i n q u e s t i o n should be concerned?" The answer i s not a c l e a r one f o r e i t h e r employers or unions with respect to o c c u p a t i o n a l h e a l t h r e s e a r c h and long term r e t e n t i o n of r e c o r d s . There are a number of f a c t o r s i n v o l v e d . F i r s t , o c c u p a t i o n a l d i s e a s e s are a f a i r l y new i s s u e , except 8 7 i n p a r t i c u l a r i n d u s t r i e s where long term hazards have been rec o g n i z e d f o r h a l f a century or more, or have r e c e n t l y r e c e i v e d e x t e n s i v e p u b l i c i t y . T h i s was d i s c u s s e d b r i e f l y i n chapter 1 and more f u l l y i n Appendix B. As a r e s u l t , unions and employers may simply be uninformed or unaware of the p o t e n t i a l f o r long-term h e a l t h problems r e l a t e d to the p r o d u c t i o n process i n which they are i n v o l v e d , and t h e r e f o r e c o n s i d e r them to be of no concern in t h e i r p o l i c y making or c o n t r a c t n e g o t i a t i o n s . Second, the employer has an economic i n c e n t i v e (see Appendix C) to d e a l with them as not r e l e v a n t i n t h i s . i n d u s t r y or as someone e l s e ' s problem. (Note that the s t r e n g t h of t h i s i n c e n t i v e v a r i e s with the e x p e c t a t i o n s of the employer to be i n b u s i n e s s i n the same community f o r the next twenty to f i f t y y e a r s , and other f a c t o r s . ) One of the ways of d e f l e c t i n g the i s s u e i s to present the h e a l t h problems as problems of p a r t i c u l a r i n d i v i d u a l s , due to g e n e t i c p r e d i s p o s i t i o n , p e r s o n a l h a b i t s or other f a c t o r s u n r e l a t e d to the workplace. Then the i s s u e s surrounding the i l l - h e a l t h become i s s u e s f o r the s o c i a l -w e l f a r e systems, the c l i n i c a l medical systems and c l i n i c a l and l a b o r a t o r y r e s e a r c h . T h i r d l y , the i s s u e of long term r e t e n t i o n of nominal r o l l i n f o r m a t i o n may have f a i r l y low l e v e l s of l e g i t i m a c y with both unions and employers to the extent that i t i s p e r c e i v e d as i n f r i n g i n g on p r i v a c y and c o n f i d e n t i a l i t y of employees/members. T h i s i s s u e may be s e n s i t i v e enough that one or n e i t h e r p a r t y wants to s t i r up t r o u b l e by p r e s e n t i n g p r o p o s a l s which might be p e r c e i v e d i n t h i s way. 88 O v e r a l l , l e g i t i m a c y of t h i s i s s u e f o r unions and employers may be f a i r l y low. Support i n v o l v e s both "whose d i s c o n t e n t s and whose s a t i s f a c t i o n s are i n v o l v e d " ( H a l l et al.,1975) and the general r e s e r v o i r of support at a given time and the a n t i c i p a t e d impact of the is s u e on that r e s e r v o i r . These c r i t e r i a may be more important f o r unions than employers, s i n c e unions are p o l i t i c a l o r g a n i z a t i o n s and ma i n t a i n i n g support of a m a j o r i t y of members must n e c e s s a r i l y be an almost constant o b j e c t i v e of union l e a d e r s h i p . Bacow (1980) p o i n t s out that o c c u p a t i o n a l h e a l t h may be a high p r i o r i t y to only a small s e c t i o n of the union membership, e i t h e r because of l i m i t e d areas of hazardous exposures, or because p o t e n t i a l l y hazardous jobs tend to be a s s i g n e d to low s e n i o r i t y members who may be younger and/or t r a n s i e n t , and t h e r e f o r e l e s s aware of or concerned about hazardous c o n d i t i o n s and l e s s i n f l u e n t i a l i n the union, or because of a l a c k of in f o r m a t i o n and understanding among union members g e n e r a l l y . As a r e s u l t , i t may be p o l i t i c a l l y unwise f o r a union l e a d e r s h i p to giv e t h i s i s s u e p r i o r i t y i n c o n t r a c t n e g o t i a t i o n s over i s s u e s of concern to a l a r g e r s e c t i o n of the union's membership (e.g. wages, other b e n e f i t s , t e c h n o l o g i c a l change, r e t r a i n i n g , e t c . ). The i s s u e may a l s o become important because of i t s e f f e c t at the margin i n a union e l e c t i o n . I t may be s u f f i c i e n t to e i t h e r swing votes with or a g a i n s t the incumbents. Employers may a l s o be concerned about support on an is s u e 89 l i k e t h i s among t h e i r management s t a f f or among the members of the board of d i r e c t o r s . The importance and immediacy of s u p p o r t or non-support may be l e s s apparent than i n u n i o n s but the smooth r u n n i n g of an o r g a n i z a t i o n depends upon both r e s e r v o i r s of s u pport and b a l a n c i n g of i n t e r e s t s among groups w i t h i n the e n t e r p r i s e . Good managers w i l l a s s e s s the s u pport f o r a p a r t i c u l a r p r o p o s a l b e f o r e u n d e r t a k i n g i t . L i k e u n i o n s , s u p p o r t on t h i s p a r t i c u l a r i s s u e w i t h i n the employer's o r g a n i z a t i o n w i l l depend upon the l e v e l of i n f o r m a t i o n and e d u c a t i o n about i t and the e x t e n t t o which o t h e r p r o j e c t or g o a l s a r e seen t o be j e o p a r a d i z e d by i t . Support f o r l o n g term r e t e n t i o n of r e c o r d s i s l i k e l y t o be f a i r l y low i n b oth employer and u n i o n o r g a n i z a t i o n s , except i n those i n d u s t r i e s where h e a l t h c o n c e r n s have become a s i g n i f i c a n t i s s u e . 2 . The L e g i s l a t i v e And R e g u l a t o r y Arena L e g i s l a t i v e and r e g u l a t o r y mechanisms f o r i m p r o v i n g the r e t e n t i o n of nominal r o l l i n f o r m a t i o n were d e s c r i b e d i n s e c t i o n s A. 1 . and 2 . above. The t e c h n i c a l f e a s i b i l i t y of making changes t o v a r i o u s p i e c e s of t a x , employment s t a n d a r d s or s o c i a l s e c u r i t y l e g i s l a t i o n or h e a l t h and s a f e t y r e g u l a t i o n s i s h i g h ; the a d m i n i s t r a t i v e f e a s i b i l i t y of g e t t i n g amendments on l e g i s l a t i v e agendas, g i v e n the o verburden of l e g i s l a t i v e demands i n most j u r i s d i c t i o n s , and a s s u r i n g c o m p l i a n c e w i t h such l e g i s l a t i o n i s not p a r t i c u l a r l y h i g h . As was d e s c r i b e d above, e x i s t i n g r e c o r d r e t e n t i o n r u l e s a r e d i s j o i n t e d and u n c l e a r . 9 0 Hope f o r improvement at the f e d e r a l l e v e l came p r i m a r i l y from the now defunct O f f i c e f o r the Reduction of Paperburden. T h e i r recommendation l i m i t e d r e t e n t i o n to s i x years f o r tax re c o r d s ; there was appa r e n t l y no c o n s i d e r a t i o n of long term ( i . e . twenty years or more) r e t e n t i o n of any records which might c o n s t i t u t e a nominal r o l l . These recommendations, aimed at c l e a n i n g up reco r d r e t e n t i o n requirements, have not yet been acted upon. There i s no i n d i c a t i o n that the i s s u e i s being addressed i n the p r o v i n c i a l l e g i s l a t u r e i n B.C. The t e c h n i c a l f e a s i b i l i t y of changes to p r o v i n c i a l h e a l t h and s a f e t y r e g u l a t i o n s i s a l s o h i g h ; language can be conceived which would not be at odds with e x i s t i n g p r o v i s i o n s of the h e a l t h and s a f e t y r e g u l a t i o n s . A d m i n i s t r a t i v e f e a s i b i l i t y i s a l s o probably f a i r l y h i g h . G e t t i n g amendments to the h e a l t h and s a f e t y r e g u l a t i o n s r e q u i r e s only that the Board h o l d a p u b l i c h e a r i n g p r i o r to any changes; the Board does not r e q u i r e the approval of the l e g i s l a t u r e f o r changes to the r e g u l a t i o n s . E n s u r i n g compliance with such r e g u l a t i o n s i s a l s o a d m i n i s t r a t i v e l y p l a u s i b l e , p a r t i c u l a r l y i f the requirement was l i m i t e d to p a r t i c u l a r i n d u s t r i e s and/or s i z e s of employers. The l e g i t i m a c y of the is s u e f o r f e d e r a l or p r o v i n c i a l l e g i s l a t o r s i s probably f a i r l y low. P a r t i c u l a r i n d u s t r i a l h e a l t h problems have from time to time become i s s u e s i n v a r i o u s l e g i s l a t u r e s (e.g. asbestos mines i n Quebec, uranium mining i n O n t a r i o , Saskatchewan and B.C.), but these have u s u a l l y been r a i s e d a f t e r the f a c t and have not l e d i n an or g a n i z e d way to d e s i r e f o r widespread o c c u p a t i o n a l monitoring f o r p o t e n t i a l 91 hazards. Within agencies r e s p o n s i b l e f o r h e a l t h and s a f e t y r e g u l a t i o n the l e g i t i m a c y of the i s s u e i s undoubtedly h i g h e r , s i n c e the purpose of the agency i s s p e c i f i c to these concerns. However, d i s e a s e i s s t i l l l e s s f o c a l i n these agencies than i s i n j u r y (see Appendix C), although i n t e r e s t i s growing i n d i s e a s e m o n i t o r i n g . T h i s s h i f t i n i n t e r e s t i s r e f l e c t e d i n a growing number of o f f i c i a l and p u b l i c bodies who have as an area of i n t e r e s t o c c u p a t i o n a l h e a l t h i s s u e s ; they may be expected to gi v e r i s e to i n c r e a s i n g d i s c u s s i o n and promotion of long term r e s e a r c h p l a n n i n g , thus r a i s i n g the l e g i t i m a c y of new l e g i s l a t i o n or r e g u l a t i o n . Some of the bodies which might p l a y t h i s l e g i t i m i z i n g r o l e a r e : the new (1982) j o i n t union-employer r e g u l a t i o n a d v i s o r y committee at the B.C. compensation board; the O c c u p a t i o n a l and Environmental H e a l t h Research U n i t at S t a t i s t i c s Canada; the Canadian Centre f o r Oc c u p a t i o n a l H e a l t h and S a f e t y ; u n i v e r s i t y and c o l l e g e r e s e a r c h e r s and teachers i n v o l v e d i n o c c u p a t i o n a l h e a l t h and s a f e t y q u e s t i o n s ( i n B.C. these i n c l u d e r e s e a r c h groups at Simon F r a s e r U n i v e r s i t y , U n i v e r s i t y of B r i t i s h Columbia, teachers and students i n the new two year o c c u p a t i o n a l h e a l t h and s a f e t y program at the B.C. I n s t i t u t e of Technology and i n i n d i v i d u a l courses at the Capi l a n o C o l l e g e labour s t u d i e s program); and p u b l i c i n t e r e s t groups f o c u s s i n g on o c c u p a t i o n a l h e a l t h and s a f e t y , such as Vancouver Committee on Oc c u p a t i o n a l S a f e t y and Hea l t h (VanCOSH) and Windsor O c c u p a t i o n a l S a f e t y and H e a l t h group (WOSH) i n 92 Ontario. As these constituencies mature, increase t h e i r communication with one another and ide n t i f y common problems and concerns, s i g n i f i c a n t support for long term retention of nominal r o l l information for research puposes could be created. Given the location in society of many of the people concerned with the issue, s i g n i f i c a n t influence in decision making i n s t i t u t i o n s and among decision takers (through formal and informal means) can be expected. This l e g i t i m i z i n g a c t i v i t y w i l l probably progress more quickly at the health and safety agency l e v e l . On l e g i s l a t i v e agendas, th i s issue w i l l probably remain a minor item, and would become incorporated only as part of other housecleaning a c t i v i t i e s l i k e the recommendations from the Office on the Reduction of Paperburden mentioned above. The constituency aware and concerned i s small, and in r e l a t i v e terms, i s l i k e l y to remain small. The p o s s i b i l i t y does exist that should the issue make i t onto the p o l i t i c a l agenda, i t would become pu b l i c l y s i g n i f i c a n t because of opposition rather than support. This opposition could arise from the p r i v a c y / c o n f i d e n t i a l i t y concerns mentioned e a r l i e r or from the paperburden concern which has already been heard from in Ottawa. The fate of l e g i s l a t i v e proposals would be determined by the size and nature of both opposition and supporting groups, and the i r perceived impact on marginal votes by the various p o l i t i c a l p a r t i e s . Certainly at th i s time i t i s not certain that p o l i t i c i a n s would perceive s u f f i c i e n t support for the l e g i s l a t i v e change of the nature proposed to ris k supporting i t . 93 H e a l t h and s a f e t y agencies might, however, f e e l they have s u f f i c i e n t support w i t h i n t h e i r s t a f f and may f e e l they can develop support among the informed unions and employers with whom they c o n s u l t , to make the necessary r e g u l a t o r y changes more e a s i l y than would l e g i s l a t o r s . These agencies are b u f f e r e d from the d i r e c t impact of the e l e c t o r a l process and may f e e l t h e i r mandate g i v e s them a u t h o r t i y to take a c t i o n with the support of only an informed m i n o r i t y . Support would be q u a l i f i e d by the f a c t of the h i s t o r i c a l prominence a c c i d e n t and i n j u r y programs have had over d i s e a s e and by the p o s s i b i l i t y t h a t the same i n t e r e s t s who would r a l l y a g a i n s t l e g i s l a t i v e a c t i o n would orga n i z e a g a i n s t s i m i l a r r e g u l a t o r y a c t i o n . P o l i t i c a l pressure can be e x e r c i s e d on the quasi-independent compensation board; the extent to which i t i s e x e r c i s e d or responded to depends upon the p o l i t i c a l c l i m a t e of the day and the o b j e c t i v e s of the Board's top a d m i n i s t r a t i o n . The problems of support may i n f a c t be the circumstances d i c t a t i n g the f r e e z e on implementation of s e c t i o n 78 of the B.C. WCB h e a l t h and s a f e t y r e g u l a t i o n s . T h i s s e c t i o n , the o c c u p a t i o n a l medicine s e c t i o n , was i n c l u d e d i n the most recent amendments and r e f l e c t s the i n c r e a s i n g awareness and concern in the l a s t f i f t e e n y e a r s . Although the s e c t i o n i s p r i n t e d i n the book of r e g u l a t i o n s , i t i s not o f f i c i a l l y i n e f f e c t and i s not e n f o r c e d . 94 3 . P o l i c y Options: C o n c l u s i o n In summary, the most l i k e l y route f o r p o l i c y implementation r e g a r d i n g long term r e t e n t i o n of nominal r o l l i n f o r m a t i o n f o r o c c u p a t i o n a l h e a l t h r e s e a r c h purposes i s v i a h e a l t h and s a f e t y r e g u l a t i o n . T h i s route i s f e a s i b l e and i s l i k e l y to gain l e g i t i m a c y with i n c r e a s i n g a c t i v i t y by v a r i o u s i n t e r e s t groups and i n c r e a s e d d i s c u s s i o n between the h e a l t h and s a f e t y agencies and o u t s i d e i n t e r e s t groups. There may be o p p o s i t i o n from some c o n s t i t u e n c i e s but t h i s w i l l be l e s s c r i t i c a l to the q u a s i -independent r e g u l a t o r y agency than i t would be to an e l e c t e d body. The p o t e n t i a l support f o r a c t i o n by a r e g u l a t o r y agency, both w i t h i n t h e i r own o r g a n i z a t i o n s and among the unions and employers they serve, probably s t i l l needs to be developed through formal and i n f o r m a l education and d i s c u s s i o n , given that o c c u p a t i o n a l d i s e a s e r e s e a r c h i s i n a f a i r l y young stage of development i n Canada. 95 BIBLIOGRAPHY 1. A b d e l l a h , F.G., E. Lev i n e . 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Personal  P r i v a c y i n an Information S o c i e t y , Report of the Commission. Wash. D.C, 1977. 1 02 9 8 . V a l e n t i n e , Ken. "Worker H e a l t h and Record Linkage" i n t r a n s c r i p t of Hazards at Work , n a t i o n a l seminar, C. F a i r c l o u g h , ed. Toronto: Corpus Inforomation S e r v i c e s , 1977. 99. Verhanick, P.J. and C C . Seamon. Research Methods f o r  Undergraduate Students i n Nursing . USA: P r e n t i c e - H a l l , 1978. 100. Wagner, G. "The D e t e c t i o n of C a r c i n o g e n i c E f f e c t s i n Man", J . Cancer Res. C l i n . Oncol., 97 , 215-221, 1980. 101. Westin, Alan F. P r i v a c y and Freedom . New York: Atheneum, 1967. 102. Westin, Alan F. Computers, H e a l t h Records and C i t i z e n  R i g h t s . Monograph 157, U.S. N a t i o n a l Bureau of Standards, Department of Commerce. Washington, D.C, 1976. 103. Westin, Alan F. Computers, Personnel A d m i n i s t r a t i o n and  C i t i z e n R i g h t s . C S . N a t i o n a l Bureau of Standards, Department of Commerce. Washington, D.C, 1979. 104. Wynder, E.L. and G.B. G o r i . " C o n t r i b u t i o n of the Environment to Cancer I n c i d e n c e : An E p i d e m i o l o g i c a l E x e r c i s e " , (U.S.) JNCI, 58 ( 4 ) , 825-832, 1977. Younger Report. Great B r i t a i n : Report of the Committee on P r i v a c y . HMSO, Cmnd. 5012, 1972B. 103 APPENDIX A - EPIDEMIOLOGY: DEFINITIONS, HISTORY, METHODS AND CRITQUE A. D e f i n i t i o n s Epidemiology i s the study of the d i s t r i b u t i o n and determinants of d i s e a s e frequency i n human p o p u l a t i o n s . 1 T h i s o f t - q u o t e d d e f i n i t i o n stands as the most c o n c i s e statement of the concern of epidemiology: human p o p u l a t i o n s , as opposed to the c l i n i c a l study of i n d i v i d u a l s ; the d i s t r i b u t i o n of h e a l t h and d i s e a s e , i n c l u d i n g s u b - c l i n i c a l d i s e a s e i d e n t i f i c a t i o n ; and i d e n t i f i c a t i o n of circumstances and f a c t o r s a s s o c i a t e d with d i s e a s e occurence, whether they be m i c r o b i o l o g i c a l , t o x i c o l o g i c a l , g e n e t i c , s o c i a l or environmental. Epidemiology i s i d e n t i f i e d by H o l l a n d and Karhausen, 1978, as one of the three b a s i c t o o l s of medical r e s e a r c h . The f i r s t i s c l i n i c a l i n v e s t i g a t i o n of i n d i v i d u a l s , the second i s experimental medicine using animal r e s e a r c h , and the t h i r d i s epidemiology, with i t s focus on the s t a t i s t i c a l a n a l y s i s of d i s e a s e p a t t e r n s i n p o p u l a t i o n s . C l i n i c a l p r a c t i c e u s u a l l y e n t a i l s the i n t e r v e n t i o n i n the course of an i l l n e s s e i t h e r to prevent i t becoming e s t a b l i s h e d or a r r e s t i t when e s t a b l i s h e d ; Barker and Rose (1976) p o i n t out that epidemiology i s r e l a t e d to p r e v e n t i o n of d i s e a s e i n i t s a t t e n t i o n to the e a r l y stages i n the n a t u r a l h i s t o r y and i d e n t i f i c a t i o n of pathogenic agents and environmental i n f l u e n c e s . The comprehensive nature of e p i d e m i o l o g i c a l concerns has caused some debate as to whether epidemiology i s best c h a r a c t e r i z e d as a method or as a s c i e n c e i n i t s own r i g h t . 2 Fox et a l . , 1970, s t a t e that epidemiology " i s not the p r o p r i e t o r of a w e l l - d e f i n e d and homogeneous body of knowledge as i s the case with a b a s i c or pure s c i e n c e . . . . R a t h e r , epidemiology i s a d i s c i p l i n e which has evolved r e l a t i v e l y s p e c i a l i z e d methods f o r i n v e s t i g a t i n g d i s e a s e c a u s a t i o n and b r i n g i n g to bear... s p e c i f i c knowledge and s p e c i a l s k i l l s from many other s c i e n c e s . " For example , t o o l s used by the e p i d e m i o l o g i s t to take p o p u l a t i o n samples, d e f i n e and assess d i s e a s e s t a t e s , o b t a i n p e r s o n a l h i s t o r i e s , l i f e s t y l e i n f o r m a t i o n and p s y c h o l o g i c a l assessments, o b t a i n environmental measures, review a v a r i e t y of r e c o r d systems, death and d i s e a s e r e g i s t r i e s , do s t a t i s t i c a l a n a l y s es and i n t e r p r e t r e s u l t s are drawn from the f i e l d s of s t a t i s t i c s , s o c i o l o g y , psychology, c l i n i c a l medicine, b i o c h e m i s t r y , t o x i c o l o g y , i n d u s t r i a l hygiene, computer-science and probably many more. T h i s i s a minor a d a p t a t i o n of the d e f i n i t i o n p r o v i d e d MacMahon and Pugh, 1970, which s t a t e s : "Epidemiology i s the study of the d i s t r i b u t i o n and determinants of d i s e a s e frequency i n man." 2See Fox, H a l l and Elveback, 1970, p.10; Anderson, 1965; and T e r r i s , 1962. 1 04 More recent w r i t e r s have s t a t e d f a i r l y broad aims f o r epidemiology and appear to have side s t e p p e d the debate over methodology or s c i e n c e . L i l i e n f e l d and L i l i e n f e l d (1980) r e f e r to epidemiology as a " s c i e n t i f i c d i s c i p l i n e " ; MacMahon and Pugh(l970) s t a t e "epidemiology i s an a p p l i e d d i s c i p l i n e - that i s , one concerned with the s o l u t i o n of p r a c t i c a l problems". Both sources acknowledge broad purposes f o r epidemiology, from the e l u c i d a t i o n of the e t i o l o g y of d i s e a s e to p r o v i s i o n of guidance i n the a d m i n i s t r a t i o n of h e a l t h s e r v i c e s , p a r t i c u l a r l y p r e v e n t i v e procedures and p u b l i c h e a l t h p r a c t i c e s . C e r t a i n l y a l l authors would agree with a statement by Wagner (1980) that "the s t r e n g t h of epidemiology l i e s i n i t s c a p a b i l i t y of i n t e g r a t i n g data and f i n d i n g s from v a r i o u s sources i n t o a b i o l o g i c a l concept." The c l a s s i c a l e p i d e m i o l o g i c a l t r i a d of host, agent and environment, a model p a r t i c u l a r l y u s e f u l f o r the understanding of communicable d i s e a s e occurrence, must be m o d i f i e d to adapt to the a p p l i c a t i o n s of epidemiology to c h r o n i c d i s e a s e s and the assessment of d i s e a s e p o t e n t i a l of agents, not yet a s s o c i a t e d with d i s e a s e . Smith (1979) r e p l a c e s the concept of agent with the concept of c a u s a t i v e f a c t o r s , thereby e x p l i c i t l y a l l o w i n g f o r r e c o g n i t i o n of m u l t i p l e causes. Host may be more u s e f u l l y d e s c r i b e d as groups and t h e i r c h a r a c t e r i s t i c s , and the envi ronment has had i t s comprehensive e c o l o g i c a l i n t e n t r e a f f i r m e d i n i t s a p p l i c a t i o n to contemporary e p i d e m i o l o g i c a l problems. Barrett-Conner (1978) r e f e r s to t h i s m u l t i f a c t o r a l e t i o l o g y as the web of c a u s a t i o n , an image that seems to express the nature of d i s e a s e e t i o l o g y and context of c u r r e n t e p i d e m i o l o g i c a l r e s e a r c h more a c c u r a t e l y than the more l i n e a r model of host, agent and environment. Anderson (1965) p o i n t s out that where e t i o l o g y i s u n c e r t a i n and the "agent" t h e r e f o r e undefined, or d e f i n e d only very g r o s s l y , "host" and "environment" are r e a l l y the only f a c t o r s under study. He proposes the v a r i a b l e s person, p l a c e and time as the focus of e p i d e m i o l o g i c a l study. B. H i s t o r y The r o o t s of epidemiology i n p u b l i c h e a l t h go back to the mid-nineteenth century. L i l i e n f e l d and L i l i e n f e l d (1980) s t a t e that the h y g i e n i c or p u b l i c h e a l t h movement was a major stimulus to the development of epidemiology as a d i s c i p l i n e . They d e s c r i b e the r o l e of many of the e a r l y e p i d e m i o l o g i s t s , n o t a b l y W.A. Guy, W i l l i a m F a r r , John Snow, W i l l i a m Budd, L.R. V i l l e r m e who were a c t i v e i n the p u b l i c h e a l t h and s a n i t a r y movements i n B r i t a n and France. The London E p i d e m i o l o g i c a l S o c i e t y , founded 6 March, 1850 s t a t e d among i t s purposes "1. to i n s t i t u t e r i g i d examination i n t o the causes and c o n d i t i o n s which i n f l u e n c e the o r i g i n , propagation, m i t i g a t i o n and p r e v e n t i o n of epidemic d i s e a s e s ; 105 2. to i n s t i t u t e o r i g i n a l and comprehensive researches i n t o the nature and laws of d i s e a s e ; 3. to communicate with government and l e g i s l a t u r e on matters connected with the preve n t i o n of epidemic d i s e a s e s ; " ( L i l i e n f e l d and L i l i e n f e l d , 1980, 9(4), page 301.) The l a c k of a p u b l i c h e a l t h movement and a v i t a l s t a t i s t i c s system i n the USA durin g t h i s same p e r i o d hindered the development of epidemiology i n the United S t a t e s r e l a t i v e to Great B r i t a i n i n the L i l i e n f e l d s ' o p i n i o n . American students of the French teacher of q u a n t i t a t i v e reasoning i n the the study of d i s e a s e , P.C.-A. L o u i s , who had s t r o n g l y i n f l u e n c e d many of the B r i t i s h e p i d e m i o l o g i s t s , r e t u r n e d to the USA and e s t a b l i s h e d e p i d e m i o l o g i c a l c e n t r e s i n Boston and New York C i t y . Without the impetus of a p u b l i c h e a l t h movement however, e p i d e m i o l o g i c a l a c t i v i t y d i d not f l o u r i s h to the degree that i t d i d i n B r i t a i n . Epidemiology i s s t i l l seen by most w r i t e r s as l o c a t e d i n the p u b l i c h e a l t h sphere: "Epidemiology i s a b a s i c s c i e n c e of s o c i a l medicine and p u b l i c h e a l t h " (Anderson, 1965); "as pa r t of [ e p i d e m i o l o g i c a l ] method, the i d e n t i f i c a t i o n of p o p u l a t i o n s at  r i s k (emphasis i n o r i g i n a l ) i s an e a r l y step....Another p a r t of the e p i d e m i o l o g i c a l model i s ... p r e v e n t i o n . " (Smith, 1979); and "The s c i e n c e of epidemiology i s concerned with cause, n a t u r a l h i s t o r y and i n t e r r e l a t i o n s h i p s of d i s e a s e . I t c o u l d be regarded as the a n a l y t i c arm of p u b l i c h e a l t h and p r e v e n t i v e medicine" (Corwin,l949 i n LeRiche et a l . , 1971). However, some w r i t e r s express a concern f o r a weakening r e l a t i o n s h i p between e p i d e m i o l o g i c a l r e s e a r c h and p u b l i c h e a l t h p r a c t i c e , r e l a t e d to i n c r e a s i n g s p e c i a l i z a t i o n of the former: "those who produce data needed f o r p r e v e n t i v e programs (namely e p i d e m i o l o g i s t s ) and those i n charge of c a r r y i n g out such programs very o f t e n are not, u n l i k e i n the good o l d days, the same people at a l l , . . . [ a n d ] the i n c r e a s i n g tendency toward o v e r s p e c i a l i z a t i o n [has] ... c o n t r i b u t e d to making the l i a s o n between r e s e a r c h and p r a c t i c e more tenuous." (Szklo,1981). Other authors s t a t e "During the past ten years or so i n the Uni t e d S t a t e s . . . the s c i e n t i f i c d i s c i p l i n e of epidemiology, with a l l i t s accomplishments, i s i n c r e a s i n g l y becoming d i v o r c e d from the p u b l i c h e a l t h a c t i v i t i e s of the r e a l world" c a u s i n g them to urge a renewed e f f o r t by e p i d e m i o l o g i s t s to "maintain c l o s e c o n t a c t with the problems of the r e a l world" ( L i l i e n f e l d and L i l i e n f e l d , 1980). An i l l u s t r a t i o n of how e p i d e m i o l o g i s t s c u r r e n t l y become i n v o l v e d i n p u b l i c h e a l t h i s s u e s w i t t i n g l y or u n w i t t i n g l y and how t h e i r p e r c e p t i o n of t h e i r work, as r e s e a r c h or as a p u b l i c h e a l t h a c t i v i t y , i s important i s given by Stebbings (1981). He' s t a t e s that e p i d e m i o l o g i s t s may be p u l l e d from t h e i r v a r i o u s i n s t i t u t i o n a l l o c a t i o n s , f o r example, l o c a l government h e a l t h 106 departments, u n i v e r s i t i e s who p l a y a s e r v i c e r o l e w i t h i n t h e i r r e g i o n , or n a t i o n a l governmental agencies, to e v a l u a t e the h e a l t h impact of a l o c a l source of p o l l u t i o n . Such a task he r e f e r s to as h e a l t h s u r v e i l l a n c e , an a c t i v i t y f r e q u e n t l y i n i t i a t e d as a r e s u l t of l o c a l p u b l i c concern. He notes that these type of i n v e s t i g a t i o n s f r e q u e n t l y may not q u a l i f y as r e s e a r c h per se s i n c e exposed p o p u l a t i o n s are s m a l l , or p o l l u t a n t exposure may be d i f f i c u l t to measure. The r e s u l t s are g r o s s l y u n d i s c e r n i n g s t u d i e s . N e v e r t h e l e s s , he argues that "morally the p u b l i c h e a l t h p r a c t i t i o n e r may have stronger i n c e n t i v e than the researcher to be r i g o r o u s about methodology. Truth i n r e s e a r c h i s u s u a l l y a r r i v e d at through c o n s i s t e n c y of r e s u l t s from s e v e r a l teams of i n v e s t i g a t o r s ; but t r u t h i n s u r v e i l l a n c e must be concluded from study of one l i m i t e d p o p u l a t i o n , u s u a l l y too s m a l l . F a l s e p o s i t i v e r e s u l t s have u n d e s i r e a b l e e f f e c t s on r e s i d e n t s ' morale, o f t e n on the economies of the l o c a l community, and i n l i t i g a t i o n . F a l s e negative r e s u l t s are unjust to the a f f l i c t e d . "The r e s p o n s i b i l i t y i s heavy, but I'm not sure how we are best assured of r i g o r o u s s t u d i e s . . . " The p u b l i c h e a l t h p r a c t i t i o n e r may be more h i g h l y motivated to do r i g o r o u s s t u d i e s of l o c a l problems, as Stebbings suggest, but c o n v e r s e l y , may temper h i s / h e r r e s u l t s due to the very concerns Stebbings notes above: concern f o r economic impact on the community, r e s i d e n t s ' morale, p o s s i b l e l i t i g a t i o n . The p u b l i c h e a l t h p r a c t i o n e r makes a d e c i s i o n about .whether a c t i o n i s warranted, given the r e s u l t s of e p i d e m i o l o g i c a l study. S z k l o (1981) s t a t e s two f a c t o r s i n f l u e n c i n g t h i s d e c i s i o n : i ) i s the c a u s a l agent/suspected r i s k f a c t o r a n e c e s s i t y ? how e s s e n t i a l i s i t s use or exposure l e v e l ? i i ) what are the s i z e of b e n e f i t s from i t s use i n r e l a t i o n to the s i z e of c o s t s of modifying or s u b s t i t u t i n g f o r i t ? Given that these are l e g i t i m a t e concerns of the p u b l i c h e a l t h p r a c t i o n e r , the q u e s t i o n a r i s e s : to what extent do these concerns i n f l u e n c e the areas of i n v e s t i g a t i o n undertaken, the r i g o r with which the i n v e s t i g a t i o n i s done or the way i n which r e s u l t s are communicated? T h i s area of concern w i l l not be addressed f u r t h e r , but i s i n t r o d u c e d here to g i v e an a p p r e c i a t i o n i n t h i s overview of epidemiology of the s o c i a l nature of e p i d e m i o l o g i c a l r e s e a r c h . There i s no doubt that the e a r l y f o c u s s i n g of epidemiology on i n f e c t i o u s d i s e a s e s has s h i f t e d , as has p u b l i c h e a l t h p r a c t i c e i t s e l f , to i n c l u d e many other p r e s s i n g h e a l t h concerns. Anderson (1965) dates t h i s broadening of p e r s p e c t i v e from D o l l and H i l l ' s (1950) work on smoking and lung cancer, and c a l l s t h i s a r e t u r n to the s t y l e of n i n e t e e n t h century epidemiology and i t s a t t e n t i o n to the i n t e r r e l a t i o n s h i p of the i n d i v i d u a l and 107 the environment. C. General Types of E p i d e m i o l o g i c a l I n v e s t i g a t i o n There are three major types of e p i d e m i o l o g i c a l i n v e s t i g a t i o n : d e s c r i p t i v e , a n a l y t i c , and expe r i m e n t a l . D e s c r i p t i v e s t u d i e s are u s u a l l y an i n t i a l attempt to c r e a t e a p r o f i l e of a dis e a s e or a p o p u l a t i o n . D e s c r i p t i v e s t u d i e s i n v o l v e a r i g o r o u s attempt to s t a t e , using data from e x i s t i n g i n f o r m a t i o n and re c o r d s , what d i s e a s e p r e c i s e l y i s being i n v e s t i g a t e d ; where i t occurs and d i f f e r e n c e s i n r a t e s ( m o r b i d i t y , m o r t a l i t y ) among v a r i o u s l o c a t i o n s ; when i t occurs, n o t i n g trends over years, seasons, or even the day; and who i t a f f e c t s , c l a r i f y i n g f a c t o r s such as race, sex, age, s o c i o -economic s t a t u s , occupation group, behaviors (e.g. smoking, e x e r c i s e ) and medical events (e.g. pregnancy). T h i s d e s c r i p t i v e stage of e p i d e m i o l o g i c a l work i s u s u a l l y h y p o t h e s i s g e n e r a t i n g . A n a l y t i c s t u d i e s go beyond the d e s c r i p t i o n of group c h a r a c t e r i s t i c s and attempt to determine why the d i s e a s e o c c u r s . A n a l y t i c s t u d i e s t e s t the s t r e n g t h of a s s o c i a t i o n s between v a r i a b l e s e.g. between presence of d i s e a s e and h i s t o r y of p a r t i c u l a r exposures. T h i s i s s t i l l done w i t h i n the realm of " n a t u r a l experiments", that i s , without m a n i p u l a t i n g the p o p u l a t i o n under study. Both a n a l y t i c s t u d i e s and d e s c r i p t i v e s t u d i e s o f t e n r e l y on e x i s t i n g data, u s u a l l y c o l l e c t e d f o r purposes other than e p i d e m i o l o g i c a l r e s e a r c h . These may be h o s p i t a l or other medical or s o c i a l s e r v i c e agency r e c o r d s , government h e l d data c o l l e c t e d through the census, v i t a l s t a t i s t i c s , income tax, or other programs, or they may be p r i v a t e r e c o r d s , such as employer personnel f i l e s or union membership l i s t s . A n a l y t i c s t u d i e s f r e q u e n t l y may supplement these kinds of records with a d d i t i o n a l i n f o r m a t i o n c o l l e c t e d s o l e l y f o r the re s e a r c h i n q u e s t i o n . Such supplementary i n f o r m a t i o n may be gathered through w r i t t e n q u e s t i o n n a i r e s or v e r b a l i n t e r v i e w s , medical examination or t e s t i n g , or environmental m o n i t o r i n g . A n a l y t i c s t u d i e s f a l l g e n e r a l l y i n t o two types, d i f f e r e n t i a t e d on the b a s i s of the d i r e c t i o n of the i n v e s t i g a t i o n . One kind of r e s e a r c h design begins by i d e n t i f y i n g a p o p u l a t i o n on the b a s i s of an exposure of concern (as s p e c i f i c as a p a r t i c u l a r chemical or as gen e r a l as a kind of i n d u s t r y or g e o g r a p h i c a l region of residence) and then i n v e s t i g a t e s a l l s u b j e c t s f o r subsequent h e a l t h s t a t u s outcomes ( o f t e n measured by s p e c i f i c kinds of m o r b i d i t y or causes of m o r t a l i t y ) . The d i r e c t i o n of i n v e s t i g a t i o n i s from exposure to outcome. The other type of design r e v e r s e s the d i r e c t i o n of i n v e s t i g a t i o n . A p o p u l a t i o n i s i d e n t i f i e d on the b a s i s of a d i s e a s e , medical c o n d i t i o n or cause of death (an outcome), and i n d i v i d u a l h i s t o r i e s of exposure are i n v e s t i g a t e d . 108 The language used to d e s c r i b e each of these designs has v a r i e d over time and s c h o o l s . To date there i s no standard use of terms, which causes some d i f f i c u l t y . The terms r e t r o s p e c t i v e and p r o s p e c t i v e are the source of much of the c o n f u s i o n . These terms have been u s e d - i n two d i f f e r e n t ways (Friedman, 1974). One meaning r e l a t e s s o l e l y to the time p e r i o d over which the data were recorded i n r e l a t i o n to the time the d e c i s i o n was made to do the study. In t h i s sense, " r e t r o s p e c t i v e s t u d i e s i n v o l v e o b s e r v a t i o n s that have been recorded i n the p a s t . . . . P r o s p e c t i v e s t u d i e s i n v o l v e the c o l l e c t i o n of o b s e r v a t i o n s a f t e r the d e c i s i o n i s made to c a r r y out the study." (Friedman, 1974) Within t h i s framework, e i t h e r type of a n a l y t i c study c o u l d be done i n a r e t r o s p e c t i v e or p r o s p e c t i v e manner. A s l i g h t t w i s t on t h i s meaning of r e t r o s p e c t i v e and p r o s p e c t i v e i s MacMahon and Pugh's (1970) use. The terms r e f e r , i n t h e i r usage, to the i n v e s t i g a t o r s ' r e l a t i o n s h i p to the r e l e v a n t events (cause(s) and e f f e c t ( s ) ) , r a t h e r than to the r e c o r d i n g of those events as i n Friedman's useage. MacMahon and Pugh s t a t e that i n a r e t r o s p e c t i v e study both the cause (exposure) and the e f f e c t (outcome) have o c c u r r e d when the study i s i n i t i a t e d . E i t h e r k i n d of a n a l y t i c study can be r e t r o s p e c t i v e . In a p r o s p e c t i v e study, r e l e v a n t causes (exposures) may or may not have oc c u r r e d and the i n v e s t i g a t o r must wait f o r the c o n d i t i o n , d i s e a s e or death to occur to the members of the p o p u l a t i o n under study. Obviously the type of a n a l y t i c study which begins by i d e n t i f y i n g a p o p u l a t i o n on the b a s i s of an outcome cannot be c a r r i e d out p r o s p e c t i v e l y , w i t h i n MacMahon and Pugh's use of the term. The other use of the terms p r o s p e c t i v e and r e t r o s p e c t i v e , as o u t l i n e d by Friedman (1974), i s r e l a t e d to the time sequence of i n v e s t i g a t i o n of causes (exposures) and the occurence of d i s e a s e . Fox et a l . (1970) d e s c r i b e r e t r o p e c t i v e s t u d i e s as l o o k i n g backward ( i . e . i n v e s t i g a t i n g ) from the d i s e a s e to p r i o r exposure and p r o s p e c t i v e s t u d i e s as l o o k i n g forward from exposures to r e s u l t i n g d i s e a s e . They s t a t e "the terms r e t r o s p e c t i v e and p r o s p e c t i v e r e f e r to how the data are analyzed and not to how or when they are c o l l e c t e d . " A number of other terms have come to be used to r e f e r to these d i f f e r e n t types of a n a l y t i c i n v e s t i g a t i o n s . The v a r i o u s terms and some of the authors who use them are l i s t e d below. exposure > outcome p r o s p e c t i v e (Fox et al.,1970) cohort (MacMahon and Pugh, 1970; Friedman,1974; S c h o t t e n f e l d and Haas,1978) i n c i d e n c e (Friedman, 1974) l o n g i t u d i n a l ( S c h o t t e n f e l d and Haas,1978) 109 outcome > exposure r e t r o s p e c t i v e (Fox et al.,1970) c a s e - h i s t o r y (MacMahon et a l . , 1960; S c h o t t e n f e l d and Haas,1978) case c o n t r o l (MacMahon and Pugh, 1970; Friedman, 1974; S c h o t t e n f e l d , and Haas,1978) Cohort and case c o n t r o l are the terms most widely used at the moment 1 , p e r m i t t i n g the terms p r o s p e c t i v e and r e t r o s p e c t i v e to be used to r e f e r to the i n v e s t i g a t o r ' s r e l a t i o n s h i p to events ( f o l l o w i n g MacMahon and Pugh, 1970). F o l l o w i n g t h i s usage, case c o n t r o l s t u d i e s , i n v o l v i n g as they do p o p u l a t i o n s i d e n t i f i e d on the b a s i s of the d i s e a s e or c o n d i t i o n of i n t e r e s t , are n e c e s s a r i l y r e t r o s p e c t i v e . The i n v e s t i g a t o r i s i n q u i r i n g i n t o exposures that have a l r e a d y taken p l a c e . T h e r e f o r e the terms p r o s p e c t i v e and r e t r o s p e c t i v e are used only i n r e f e r e n c e to cohort s t u d i e s . If both exposures and outcomes have o c c u r r e d at the time of the i n v e s t i g a t i o n , the study i s d e s c r i b e d as r e t r o s p e c t i v e ; a study i s p r o s p e c t i v e i f the outcome has yet to occur. In some p r o s p e c t i v e s t u d i e s both the exposure and the outcome have yet to occur. Both Friedman (1974) and MacMahon and Pugh (1970) s p e c i f i c a l l y s t a t e a p r e f e r e n c e f o r the terms p r o s p e c t i v e and r e t r o s p e c t i v e to be used i n the manner d e s c r i b e d immediately above, and that they be abandoned as synonyms f o r cohort and case c o n t r o l . The reason f o r t h i s p r e f e r e n c e i s the f a c t t h a t i n everyday use the terms bear a r e l a t i o n s h i p to c a l e n d a r time. The use MacMahon and Pugh propose corresponds with the everyday understanding of the r e l a t i o n s h i p of the observer to e v e n t s ; e i t h e r he/she i s studying something that has a l r e a d y o c c u r r e d (a r e t r o s p e c t i v e study) or something that has yet to occur (a p r o s p e c t i v e s t u d y ) . The use of the terms independent of the observer's r e l a t i o n to events i n calendar time i s , i n t h e i r view, c o n f u s i n g . T h i s use i s not u n i v e r s a l however and any mixture of terms can be found i n r e p o r t i n g . Attempts to bridge the v a r i o u s schools sometimes r e s u l t s i n terms l i k e " h i s t o r i c o - p r o s p e c t i v e 1 Fox et a l . , 1970, r e f e r to "case h i s t o r y " and "cohort" as new terms employed f i r s t by MacMahon et a l . i n 1960 to a v o i d the c o n f u s i o n a r i s i n g from the everyday meaning of r e t r o s p e c t i v e and p r o s p e c t i v e and the s p e c i f i c manner used by e p i d e m i o l o g i s t s . They s t a t e "we have r e t a i n e d the o l d terminology, but readers should know th a t these synonyms e x i s t and are being used with i n c r e a s i n g frequency." 1 10 cohort study". The more s u c c e s s f u l avoidance of the use of p r o s p e c t i v e and r e t r o s p e c t i v e i s the term " h i s t o r i c a l cohort study" i n s t e a d of MacMahon and Pugh's " r e t r o s p e c t i v e cohort study". Some other terms that are i n use are l o n g i t u d i n a l s t u d i e s , prevalence s t u d i e s and c r o s s - s e c t i o n a l s t u d i e s . Most case c o n t r o l and cohort s t u d i e s are l o n g i t u d i n a l ; i n f o r m a t i o n on the p o p u l a t i o n under study r e l a t e s to more than one p o i n t i n time. C r o s s - s e c t i o n a l s t u d i e s c o l l e c t cause and e f f e c t i n f o r m a t i o n f o r the same p o i n t i n time; they assess c u r r e n t h e a l t h s t a t u s i n r e l a t i o n to c u r r e n t exposures. Where d i s e a s e i n a p o p u l a t i o n i s determined i n a c r o s s - s e c t i o n a l manner, i t w i l l r e f l e c t d i s e a s e prevalence as opposed to i n c i d e n c e . MacMahon and Pugh (1970) gi v e an example of the use of these terms: "A study of the prevalence of r e s p i r a t o r y d i s e a s e i n workers i n a f l a x m i l l would be an i n s t a n c e of the c r o s s - s e c t i o n a l approach i n a study u s i n g the cohort method of study group s e l e c t i o n " . The s t r e n g t h s and weaknesses of case c o n t r o l and cohort s t u d i e s are to a l a r g e extent complementary. The case c o n t r o l study i s p a r t i c u l a r l y u s e f u l i n studying r a r e d i s e a s e s , i n e x p l o r i n g i n a d e t a i l e d way or f o r m u l t i p l e f a c t o r s the backgrounds of a f f e c t e d and u n a f f e c t e d people and f o r the i n i t i a l i n v e s t i g a t i o n of a s p e c i f i c e t i o l o g i c a l h y p othesis ( S c h o t t e n f e l d and Haas, 1978; MacMahon and Pugh, 1970). They are u s u a l l y cheaper and q u i c k e r than cohort s t u d i e s . T h e i r l i m i t a t i o n i s that i n f o r m a t i o n r e l a t e d to the hypothesized cause must be kept i n e i t h e r w r i t t e n reocrds or memory u n t i l a f t e r the d i s e a s e o c c u r s . Often t h e r e may not be w r i t t e n records and memory may be b i a s e d by the f a c t of having developed the d i s e a s e . T h i s w i l l make comparison with the non-diseased ( c o n t r o l ) group d i f f i c u l t . Cohort s t u d i e s are r e c o g n i z e d as the " c a d i l l a c " of a n a l y t i c i n v e s t i g a t i o n s , p a r t i c u l a r l y i f they are p r o s p e c t i v e . T h i s i s p r i m a r i l y because they permit a d i r e c t measure of i n c i d e n c e or r i s k of developing a d i s e a s e i n i n d i v i d u a l s with a s p e c i f i c c h a r a c t e r i s t i c ( S c h o t t e n f e l d and Haas, 1978). Cohort s t u d i e s are only a p p r o p r i a t e when the d i s e a s e i n q u e s t i o n i s r e l a t i v e l y f requent; very l a r g e c o h o r t s would be r e q u i r e d to o b t a i n f i r m estimates of d i s e a s e r a t e s f o r r a r e d i s e a s e s , which i s an uneconomical approach (MacMahon and Pugh, 1970). D. Epidemiology: I t s Conceptual Framework and a C r i t i q u e Epidemiology, as a branch of medicine g e n e r a l l y , has t r a d i t i o n a l l y f u n c t i o n e d from the same conceptual framework, or paradigm, as has c l i n i c a l medicine. Within epidemiology p a r t i c u l a r l y there has been l i t t l e a t t e n t i o n p a i d to the t h e o r e t i c a l assumptions behind the p r a c t i c e . Paterson (1981) p o i n t s out that i n the t e a c h i n g of epidemiology, the t h e o r e t i c a l b a s i s i s u s u a l l y i m p l i c i t , and emphasis i s given to methodology 111 and s t a t i s t i c a l technique. M i s h l e r (1981) notes that c l i n i c a l medicine, pathology and b i o s t a t i s t i c s are r e f e r r e d to as p a r t i c u l a r l y p e r t i n e n t d i s c i p l i n e s f o r epidemiology by MacMahon and Pugh (1970), while the s o c i a l and b e h a v i o r a l s c i e n c e s , which have to a much g r e a t e r extent d e f i n e d a l t e r n a t i v e c o n c e p t u a l frameworks w i t h i n t h e i r d i s c i p l i n e s , are omitted. Both M i s h l e r C1981) and Paterson (1981) argue that the l a c k of d i s c u s s i o n w i t h i n epidemiology of i t s t h e o r e t i c a l b a s i s i m p l i e s a n o n - c r i t i c a l stance toward the paradigm which i s i n p l a c e . Paterson s t a t e s : I f we are to accept with L i l i e n f e l d 1 that the r o l e of the e p i d e m i o l o g i s t i s to ' i n t e g r a t e the data necessary f o r h i s a n a l y s i s from d i v e r s e d i s c i p l i n e s ' i n c l u d i n g that from s o c i a l s c i e n c e then i t i s important that we have a c l e a r understanding of the t h e o r e t i c a l p r i n c i p l e s being used by these d i s c i p l i n e s and t h e i r r e l a t i o n s h i p to the p r i n c i p l e s being used by the e p i d e m i o l o g i s t . M i s h l e r (1981) d e s c r i b e s the c o n c e p t u a l framework as the b i o m e d i c a l model of i l l n e s s . Paterson (1981) and Chalmers ( 1982) d e s c r i b e i*t as a p o s i t i v i s t t h e o r e t i c a l approach. M i s h l e r (1981) s t a t e s there ar four assumptions inherent i n the b i o m e d i c a l model: i . the d e f i n i t i o n of d i s e a s e as d e v i a t i o n from normal b i o l o g i c a l f u n c t i o n i n g ; i i . the d o c t r i n e of s p e c i f i c e t i o l o g y ( i . e . that each d i s e a s e has a s p e c i f i c pathogenesis and p a t h o l o g y ) ; i i i . the assumption of g e n e r i c d i s e a s e s ( i . e . "that each d i s e a s e has s p e c i f i c and d i s t i n g u i s h i n g f e a t u r e s that are u n i v e r s a l to the human s p e c i e s . That i s , d i s e a s e symptoms and processes are expected to be the same in d i f f e r e n t h i s t o r i c a l p e r i o d s and i n d i f f e r e n t c u l t u r e s and s o c i e t i e s . " ) i v . the s c i e n t i f i c n e u t r a l i t y of medicine ( i . e . that medicine "has adopted not only the r a t i o n a l i t y of the s c i e n t i f i c method but the concomitant values of the s c i e n t i s t , namely, o b j e c t i v i t y and 1 L i l i e n f e l d , A.M. Foundations of Epidemiology , Oxford U n i v e r s i t y Press, 1970. p.34. 1 12 n e u t r a l i t y . ... the i m p l i c a t i o n [ i s ] that the work ... i s guided p r i m a r i l y by ' o b j e c t i v e ' s c i e n t i f i c r u l e s and c r i t e r i a and t h e r e f o r e i s r e l a t i v e l y u n a f f e c t e d by wider s o c i a l , c u l t u r a l , and p o l i t i c a l f o r c e s . " ) ( q u o t a t i o n s from M i s h l e r , 1981) Epidemiology r e l i e s upon t h i s conceptual framework f o r d e f i n i t i o n of i t s problems, design of s t u d i e s and i n t e r p r e t a t i o n of f i n d i n g s a c c o r d i n g to M i s h l e r . As a r e s u l t , even though epidemiology's i n v e s t i g a t i o n of the h e a l t h of p o p u l a t i o n s and communities c o n t r a s t s with c l i n i c a l medicine's focus on i n d i v i d u a l p a t i e n t s and cure of s p e c i f i c d i s e a s e s , epidemiology i s s e v e r e l y l i m i t e d i n i t s h a n d l i n g of s o c i a l and c u l t u r a l f a c t o r s . They are used " e s s e n t i a l l y as i n d i c a t o r s of s i t u a t i o n s that i n c r e a s e or decrease b i o l o g i c a l r i s k f a c t o r s " ( M i s h l e r , 1981). Although epidemiology's "search f o r s o c i a l c o r r e l a t e s of i l l n e s s f a l l s o u t s i d e the boundaries, or at l e a s t s t r e t c h e s the l i m i t s of the b i o m e d i c a l model", as M i s h l e r s t a t e s , "epidemiology does not o f f e r an a l t e r n a t i v e to the b i o m e d i c a l model e i t h e r i n i t s d e f i n i t i o n of i l l n e s s or i n i t s theory of d i s e a s e c a u s a t i o n . " Paterson (1981) and Chalmers (1982), by l o c a t i n g epidemiology i n the p o s i t i v i s t t r a d i t i o n , argue, to the same end as M i s h l e r (1981), that epidemiology has been l i m i t e d as a r e s u l t to a narrow d e s c r i p t i o n of d i s e a s e c a u s a t i o n . The p o s i t i v i s t approach i s c h a r a c t e r i z e d by Paterson and Chalmers as r e l y i n g upon the c a r e f u l examination of observable data ( i . e . a c c e s s i b l e to the senses); i n medicine t h i s i n v o l v e s the d e f i n i t i o n of d i s e a s e as a " b i o l o g i c a l phenomenon caused by one or more f a c t o r s which are always a s s o c i a t e d and observed i n the e x i s t e n c e of that d i s e a s e " (Paterson, 1981). Paterson s t a t e s that an e f f e c t of t h i s i s the machine or mechanical model of human f u n c t i o n i n g which i s r e f l e c t e d i n the nature of medical s p e c i a l i t i e s , a d i v i s i o n of labour based upon body p a r t s and f u n c t i o n s (e.g. c a r d i o l o g y , neurology, e t c . ) . Paterson (1981) argues that t h i s emphasizes o b j e c t i v e r a t h e r than s u b j e c t i v e c r i t e r i a i n the d e f i n i t i o n of d i s e a s e and l i m i t s the a b i l i t y t o see d i s e a s e as p a r t of an o r g a n i c a l l y i n t e g r a t e d whole. Chalmers (1982) s t a t e s that p o s i t i v i s m as employed i n contemporary s o c i a l s c i e n c e s i s c o n s e r v a t i v e . T h i s i s p r i m a r i l y because o b s e r v a t i o n a l foundations f o r theory development are dependent to a s i g n i f i c a n t extent on the w e l l - e s t a b l i s h e d t h e o r i e s of the day. He s t a t e s "the p o s i t i v i s t method le a v e s no scope f o r breaking out of the t h e o r e t i c a l framework i m p l i c i t i n the o b s e r v a t i o n a l data. R a d i c a l l y novel 'data' become a v a i l a b l e only when there i s a r a d i c a l l y new theory capable of g u i d i n g us to them". Both Paterson (1981) and Chalmers (1982) argue that the p o s i t i v i s t approach can lead only to " s u p e r f i c i a l " f i n d i n g s , , that i s , can d e s c r i b e , but cannot f i n a l l y e x p l a i n the phenomenon 1 13 under i n v e s t i g a t i o n . The s t r u c t u r a l r e l a t i o n s h i p of f a c t o r s a s s o c i a t e d with d i s e a s e ( i n c l u d i n g d i s e a s e d e f i n i t i o n i t s e l f ) i s not i n v e s t i g a t e d as a c a u s a l f a c t o r , i . e . as an u n d e r l y i n g cause. For example, s o c i a l c l a s s i s not pursued as a p o t e n t i a l cause of d i s e a s e i n and of i t s e l f . Instead, as M i s h l e r has noted, when s o c i a l and c u l t u r a l f a c t o r s are i n c l u d e d as v a r i a b l e s i n e p i d i e m i o l o g i c a l i n v e s t i g a t i o n they are used to l o c a t e s p e c i f i c p o p u l a t i o n s at r i s k or to i s o l a t e c e r t a n d i s e a s e - p r o d u c i n g c o n d i t i o n s , which then permits more d i r e c t t e s t s of b i o l o g i c a l l y grounded e t i o l o g i c a l hypotheses. The i n a b i l i t y to examine s o c i a l phenomena, the nature of s o c i e t y , the s t r u c t u r e or form of s o c i e t y , means that epidemiology g e n e r a l l y operates to preserve the e x i s t i n g s o c i a l o r d e r . Change i s approached from a f u n c t i o n a l i s t or s o c i a l e n g i n e e r i n g stance, by p r o v i d i n g " p r a c t i c a l s o l u t i o n s to p r a c t i c a l problems w i t h i n the framework of s o c i e t y as i t i s . " (Paterson, 1981) What a l t e r n a t i v e frameworks are o f f e r e d f o r e p i d e m i o l o g i c a l theory and p r a c t i c e ? M i s h l e r (1981) o f f e r s the most developed a l t e r n a t i v e , drawing upon the experience of s o c i a l s c i e n t i s t s . He o f f e r s " c o n s t r u c t i v i s m " or " s o c i a l c o n s t r u c t i v i s m " as an a l t e r n a t i v e model. He d e s c r i b e s t h i s t h e o r e t i c a l framework as a major t r a d i t i o n of s o c i o l o g i c a l thought, proposing that " r e a l i t y i s c o n s t r u c t e d through human a c t i o n , and does not e x i s t independently of i t . ... the world as a meaningful (emphasis i n o r i g i n a l ) r e a l i t y i s c o n s t r u c t e d through human i n t e r p r e t i v e a c t i v i t y . " The s i g n i f i c a n c e of t h i s approach f o r e p i d e m i o l o g i c a l i n v e s t i g a t i o n i s s t a t e d by M i s h l e r as f o l l o w s : ... The work of p h y s i c i a n s and other h e a l t h p r o f e s s i o n a l s i s understood as i n t e g r a l to the d e f i n i t i o n and d i a g n o s i s of d i s e a s e , and hence in i t s p r o d u c t i o n . ... t h e i r b e l i e f s and p r a c t i c e s with regard to d i a g n o s i s and treatment are t o p i c s of i n q u i r y and r e q u i r e f u r t h e r a n a l y s i s and i n t e r p r e t a t i o n . T h e r e f o r e , the focus of i n v e s t i g a t i o n s h i f t s from p a t i e n t s ' symptoms as c r i t e r i a f o r the d i a g n o s i s ... to the ways i n which such c r i t e r i a are a p p l i e d , to i n s t i t u t i o n a l f a c t o r s that a f f e c t c l i n i c a l p r a c t i c e ... and to broader s o c i o - c u l t u r a l f o r c e s and v a l u e s that i n f l u e n c e the c h o i c e and use of p a r t i c u l a r c r i t e r i a . " ( M i s h l e r , 1981. p. 163) M i s h l e r g i v e s as an example of the c o n t r a s t i n g a n a l y t i c 1 1 4 frameworks the work of J.R. Mercer 1 on the mentally r e t a r d e d . She e x p l i c i t l y c o n t r a s t s ' c l i n i c a l ' and ' s o c i a l - s y s t e m ' approaches ( p a r a l l e l to M i s h l e r ' s biomedical and c o n s t r u c t i v i s t models) to the d e f i n i t i o n and d i a g n o s i s of mental r e t a r d a t i o n . The c l i n i c a l / b i o m e d i c a l approach d e s c r i b e s mental r e t a r d a t i o n as a type of i n t e l l e c t u a l d e f i c i t which can be d e f i n e d and diagnosed with r e s p e c t to m e d i c a l - p a t h o l o g i c a l and/or s t a t i s t i c a l models of n o r m a l i t y . P a r t i c u l a r t e s t s of i n t e l l i g e n c e are used to measure and diagnose what i s assumed to be a p e r s o n a l c h a r a c t e r i s t i c ; the pathology i s i n the person. The s o c i a l - s y s t e m / c o n s t r u c t i v i s t approach, i n c o n t r a s t , approaches mental r e t a r d a t i o n as a s o c i a l r o l e t h a t comes to be assigned to i n d i v i d u a l s through a complex s o r t i n g and s e l e c t i n g p r o c e s s . M i s h l e r s t a t e s that "In t h i s p e r s p e c t i v e there i s no one 'true' i n c i d e n c e or prevalence r a t e , and r e t a r d a t i o n i s c u l t u r e - s p e c i f i c . " M i s h l e r r e p o r t s that Mercer's study begins with the e m p i r i c a l a s s o c i a t i o n between e t h n i c i t y and mental r e t a r d a t i o n ; i n the p u b l i c school system in C a l i f o r n i a where her re s e a r c h was conducted, black and Mexican-American c h i l d r e n were h e a v i l y o v e r - r e p r e s e n t e d i n the p o p u l a t i o n of mental r e t a r d a t e s . Mercer and M i s h l e r both argue that e p i d e m i o l o g i c a l r e s e a r c h c a r r i e d out in the c l i n i c a l / b i o m e d i c a l t r a d i t i o n would stop at these f i n d i n g s , that i s , determining t h a t these are two p o p u l a t i o n s "at r i s k " . T h e o r i e s accounting f o r higher r a t e s of pathology might be generated, p o s s i b l y proposing genetic d i f f e r e n c e s , or environmental d i f f e r e n c e s such as n u t r i t i o n a l d e f i c i e n c i e s , or s o c i o l o g i c a l d i f f e r e n c e s such as f a t h e r l e s s f a m i l i e s . Mercer, p u r s u i n g a s o c i a l - s y s t e m s / c o n s t r u c t i v i s t approach, i n v e s t i g a t e d the q u e s t i o n of s o r t i n g - s e l e c t i n g mechanisms. She determined that e t h n i c i t y p l a y s a s i g n i f i c a n t r o l e i n the l a b e l i n g d e c i s i o n s made. For example, she r e p o r t s that among a l l c h i l d r e n who ' f a i l ' the IQ t e s t only 49 percent of Anglo c h i l d r e n are recommended f o r placement i n a s p e c i a l c l a s s ( i . e . l a b e l e d mentally retarded) where 70 percent of Mexican-American and black c h i l d r e n are recommended. She r e p o r t s that average IQ scores do not d i f f e r among the three f a i l i n g groups. Of those recommended f o r placement, only two-thirds of Anglo c h i l d r e n are a c t u a l l y moved to the s p e c i a l c l a s s e s while " n e a r l y a l l " of the Mexican-American and black c h i l d r e n are moved. Mercer's c o n c l u s i o n then i s that "Anglocentrism" i s i n and of i t s e l f an exp l a n a t o r y f a c t o r i n understanding the prevalence and i n c i d e n c e of mental r e t a r d a t i o n . Such a f i n d i n g does not meet the c r i t e r i a as an explanatory v a r i a b l e i n the c l i n i c a l / b i o m e d i c a l t r a d i t i o n . 1 Mercer, J.R. L a b e l i n g the M e n t a l l y Retarded . Berkeley: U n i v e r s i t y of C a l i f o r n i a Press, 1973. 115 Chalmers (1982) l i m i t s h i s d i s c u s s i o n of a l t e r n a t i v e s to p o s i t i v i s m i n epidemiology to a c a l l f o r a s c i e n t i f i c r e v o l u t i o n ( i n a Kuhnian sense, that i s a s i g n i f i c a n t s h i f t i n the dominant paradigm, or conceptual framework. 1 ). Chalmers proposes that such a r e v o l u t i o n might be to s h i f t from the concept of i n d i v i d u a l i s m ( i . e . i n d i v i d u a l s as f r e e agents, choosing l i f e s t y l e s , making d e c i s i o n s about s o c i a l i n s t i t u t i o n s , e t c .) which "permeates the modern conception of the s o c i a l world" to a concept of c l a s s as a l e v e l of a n a l y s i s i n epidemiology. Paterson (1981) proposes a " m a t e r i a l i s t epidemiology" which, l i k e M i s h l e r ' s c o n s t r u c t i v i s m , i s "based on the view that s o c i a l r e a l i t y i s the outcome of human a c t i o n " (Paterson, 1981). He s t a t e s t h a t , l i k e p o s i t i v i s m , m a t e r i a l i s m proceeds from o b j e c t i v e c r i t e r i a but, u n l i k e p o s i t i v i s m , c o n s i d e r s s o c i a l forms as an o b j e c t i v e r e a l i t y , and t h e r e f o r e as f a c t s or data with explanatory power. He s t a t e s that "the aim of a m a t e r i a l i s t epidemiology would not be to deny the observed r e l a t i o n s h i p s between v a r i o u s d i s e a s e s and d i f f e r e n t f a c e t s of the 'host', 'agent' and 'environment' but ra t h e r to penetrate beneath the s u r f a c e appearances d e s c r i b e d i n s t a t i s t i c a l a s s o c i a t i o n s to the u n d e r l y i n g socio-economic and h i s t o r i c a l context i n which these a s s o c i a t i o n s are l o c a t e d . " Applying Paterson's model to the study by Mercer of mental r e t a r d a t i o n d e s c r i b e d b r i e f l y above, we can presume that the h i s t o r i c a l and socio-economic f a c t o r s g i v i n g r i s e t o the Anglocentrism Mercer e s t a b l i s h e s as a s i g n i f i c a n t f a c t o r would be r e l e v a n t t o the e p i d e m i o l o g i c a l d e t e r m i n a t i o n of c a u s a t i o n . Paterson quotes Navarro 2 i n c o n t r a s t i n g the p o s i t i v i s t c o n c e p t i o n of c a u s a l i t y , f o c u s s i n g on the m i c r o c a u s a l i t y of d i s e a s e , with a m a t e r i a l i s t c o n c e p t i o n , which would take account a l s o of the m a c r o c a u s a l i t y , meaning the " p o l i t i c a l , economic and i d e o l o g i c a l power r e l a t i o n s " of the s o c i e t y . The i m p l i c a t i o n s of t r a d i t i o n a l epidemiology's r e l i a n c e upon a p o s i t i v i s t d e f i n i t i o n of dis e a s e ( d e s c r i b e d by M i s h l e r as the biomedical model) are best d e s c r i b e d by M i s h l e r . The s o c i a l c o n t e x t s of p a t i e n t s and t h e i r i l l n e s s e s have been n e g l e c t e d , with the r e s u l t that s o c i a l meanings of i l l n e s s go unaddressed by the b i o l o g i c a l s c i e n c e s . T h i s i n tu r n r e s u l t s i n a l i m i t a t i o n i n both the understanding and treatment of dis e a s e by medical p r a c t i t i o n e r s . M i s h l e r p o i n t s out that there i s a f u n c t i o n a l i n t e g r a t i o n between the t h e o r e t i c a l framework of medicine (the biomedical model) and i t s s o c i a l o r g a n i z a t i o n . Emphasis on t e c h n i c a l 1 See Kuhn, T.S. The S t r u c t u r e of S c i e n t i f i c R e v o l u t i o n s , Chicago: U n i v e r s i t y of Chicago Press, 1970. 2 Navarro, V i n c e n t e . "Work, Ideology and Sci e n c e : The Case of Medicine", S o c i a l Science and Medicine, 140,1980. 116 e x p e r t i s e and b i o s c i e n t i f i c knowledge, and c o n t r o l over t h i s knowledge, g i v e s medical p r a c t i t i o n e r s (and e p i d e m i o l o g i s t s ) a u t h o r i t y to d e f i n e themselves as the e x p e r t s . T h i s i s r e i n f o r c e d through h i e r a r c h i c a l r e l a t i o n s h i p s among d i f f e r e n t types of h e a l t h - c a r e personnel and between p h y s i c i a n s and p a t i e n t s (or re s e a r c h e r s and the p o p u l a t i o n under i n v e s t i g a t i o n ) , which i n t u r n supports the m o n o p o l i s t i c c o n t r o l over matters of h e a l t h by p h y s i c i a n s as a p r o f e s s i o n i n the s o c i e t y . M i s h l e r argues that an a l t e r n a t i v e framework would see medical p r a c t i t i o n e r s (and f o l l o w i n g from t h i s , r e s e a r c h e r s ) as one kind of p a r t i c i p a n t i n the s o c i a l c o n s t r u c t i o n of d i s e a s e . He s t a t e s : ... medicine, although viewed as an a p p l i e d technology w i t h i n the bi o m e d i c a l framework of assumptions about i l l n e s s as generic and u n i v e r s a l , may more adequately be understood as a s o c i a l p r a c t i c e . That i s , ..., medicine i s a c t i v e i n t e r p r e t i v e work through which a p a r t i c u l a r s o c i a l r e a l i t y i s c o n s t r u c t e d , a ' r e a l i t y ' c o n s t i t u t e d by diagnosed i l l n e s s e s and p r e s c r i b e d treatments. ... [ t h i s does not i n v o l v e ] only the a p p l i c a t i o n of s t a n d a r d i z e d biomedical c r i t e r i a and procedures ... [but i s ] guided by s o c i o c u l t u r a l v a l u e s and assumptions, organized and r e g u l a t e d by s o c i a l norms and i n s t i t u t i o n a l requirements, and s o c i a l l y c o n s e q u e n t i a l i n i t s e f f e c t s on the r i g h t s and r e s p o n s i b i l i t i e s of those l a b e l e d as s i c k ... ( M i s h l e r , 1981, p. 1 62) In summary, M i s h l e r argues that when i l l n e s s i s seen as s o c i a l l y produced, a wider range of i n f o r m a t i o n and i n t e r e s t s must be taken i n t o account than i s r e q u i r e d by the biome d i c a l model. He s t a t e s that although t h i s can be seen as a t h r e a t to medical a u t h o r i t y and the s t a t u s and power that are the accompaniments of medical dominance, i t a l s o i m p l i e s that p a t i e n t s and ot h e r s are p o t e n t i a l a l l i e s of p h y s i c i a n s i n a f f e c t i n g the the process of l a b e l i n g , d i a g n o s i s , management and treatment of i l l n e s s and t h e r e f o r e i n p r o v i d i n g more humane and s o c i a l l y r e s p o n s i v e c a r e . He suggests that c l i n i c a l p r a c t i c e c o u l d be r e t u r n e d to i t s s o c i a l c o n t e x t , t u r n i n g away from the m e d i c a l i z a t i o n of l i f e and towards the r e s o c i a l i z a t i o n of medic i n e . 1 17 APPENDIX B - OCCUPATIONAL INJURY AND DISEASE; DIMENSIONS OF THE PROBLEM Occu p a t i o n a l health, r e s e a r c h i s an area of i n c r e a s i n g p u b l i c i n t e r e s t because of growing concern about the r a t e s of i n j u r y and d i s e a s e a t t r i b u t a b l e to the workplace. Aykroyd (1980) s t a t e s "Over the l a s t eighteen months, workplace hazards have continued to be a major focus f o r p u b l i c i n t e r e s t , government p o l i c y and labour r e l a t i o n s . . . G r o w i n g r e c o g n i t i o n of the extent and c o s t s of on-the-job i l l n e s s and i n j u r y has been a major f a c t o r i n s t i m u l a t i n g p u b l i c and government concern." S i m i l a r l y , Reschenthaler (1979) notes i n c r e a s i n g i n t e r e s t i n the area i n the 1970s and l i s t s the f o l l o w i n g r e p o r t s as an i n d i c a t i o n of i n c r e a s e d a t t e n t i o n to the a r e a : • r e p o r t of the Royal Commission on the H e a l t h and S a f e t y of Workers i n Mines in O n t a r i o , 1976 (the Ham Commission); • the Beaudry Commission i n Quebec (Comite d'etude sur l a s a l u b r i t e dans l ' i n d u s t r i e de l'amiante) (1976); • Robens Report on H e a l t h and Safety at Work (1972) i n B r i t a i n ; • the Report of the I n d u s t r i a l H e a l t h and Safety Commission (Gale Commission) (1975) i n A l b e r t a ; • the major U.S. programs in t r o d u c e d i n 1970: the O c c u p a t i o n a l Safety and H e a l t h Act (OSHA) and the N a t i o n a l I n s t i t u t e f o r O c c u p a t i o n a l S a f e t y and H e a l t h (NIOSH). Some data i s presented here to sketch the dimensions of the o c c u p a t i o n a l h e a l t h and s a f e t y problem. Ashford (1976) r e p o r t s a twenty-nine per cent i n c r e a s e i n the r e p o r t e d i n j u r y r a t e i n i n d u s t r y i n the USA between 1961 and 1970. He c i t e s US N a t i o n a l S a f e t y C o u n c i l estimates of 14,200 f a t a l i t i e s a n n u a l l y due to a c c i d e n t s on the job and 2.3 m i l l i o n d i s a b l i n g i n j u r i e s a n n u a l l y . These s t a t i s t i c s r e f e r to non-a g r i c u l t u r a l workers o n l y . Canadian data r e p o r t e d by Manga et a l . (1981) s t a t e that more than 1 m i l l i o n cases of o c c u p a t i o n a l d i s e a s e , i n j u r y or f a t a l i t y are r e p o r t e d a n n u a l l y to Canadian workers' compensation boards. Manga et a l . ( l 9 8 l ) c i t e a Labour Canada r e p o r t of 1979 showing an average of 12.5 r e p o r t e d i n j u r i e s per 100 workers each year between 1969 and 1978. I t should be noted t h a t i t i s estimated 20-30% of the Canadian workforce are not covered by workers' compensation schemes (Manga et al.,1981) and that B r i t i s h (Great B r i t a i n , 1972A) and American (Sands, 1968) s t u d i e s found an u n d e r r e p o r t i n g of i n j u r i e s by 25% and 50% r e s p e c t i v e l y . Ashford (1976) c i t e s a r e p o r t (Gordon et a l . , 1971) done f o r the US Bureau of Labour S t a t i s t i c s which found a r a t i o of s e r i o u s but unreported i n j u r i e s to r e p o r t e d d i s a b l i n g i n j u r i e s of ten to one. The r a t i o of d i s a b l i n g to n o n - d i s a b l i n g i n j u r i e s showed a 118 pronounced i n c r e a s e i n Canada from 1969 to 1978 (.576 i n 1969 to .846 i n 1978; Manga et a l . 1981) though Manga et a l . ( l 9 8 l ) c a u t i o n that t h i s may r e f l e c t an i n c r e a s e i n u n d e r r e p o r t i n g of n o n - d i s a b l i n g i n j u r i e s r a t h e r than a r e l a t i v e i n c r e a s e i n d i s a b l i n g i n j u r i e s . U n d e r r e p o r t i n g of n o n - d i s a b l i n g i n j u r i e s might r e s u l t from a changing s o c i a l and economic c l i m a t e where unemployment i s i n c r e a s i n g , and job s e c u r i t y d e c r e a s i n g . A s l i g h t d e c l i n e i n i n j u r y r a t e s from 1973 to 1979 a l s o may be a f u n c t i o n of s o c i a l f a c t o r s , a c c o r d i n g to Manga et a l . ( 1981). Rates are i n f l u e n c e d by the changing p r o f i l e of employment o p p o r t u n i t i e s i n Canada, with growth i n recent years t a k i n g p l a c e p r i m a r i l y i n r e l a t i v e l y safe s e c t o r s such as f i n a n c e and s e r v i c e jobs r a t h e r than i n the more hazardous area of f o r e s t r y , mining and manufacturing. In a d d i t i o n , i n times of high unemployment, young i n e x p e r i e n c e d workers are the f i r s t to be l a i d o f f . Since t h i s group experiences higher r a t e s of o c c u p a t i o n a l a c c i d e n t s , t h e i r departure from the labour f o r c e i s l i k e l y to lower i n j u r y r a t e s . Annual o c c u p a t i o n a l f a t a l i t i e s have averaged 13.4 per 100,000 workers in Canada between 1967 and 1977. Mining and f o r e s t r y r e p o r t averages of 126.9 and 113.5 per 100,000 r e s p e c t i v e l y , with f i s h i n g r e p o r t i n g 81.8. C o n s t r u c t i o n and t r a n s p o r t workers f o l l o w with 38.8 and 28.2 deaths per 100,000. Compensation c o s t s which i n c l u d e medical a i d , compensation f o r l o s t wages, and pensions t o t a l l e d n e a r l y one b i l l i o n d o l l a r s i n Canada i n 1978. Employers absorb a d d i t i o n a l c o s t s over and above t h e i r workers compensation c o n t r i b u t i o n s , i n the form of work d i s r u p t i o n , c o s t s of h i r i n g and t r a i n i n g a s u b s t i t u t e worker, damage to equipment and m a t e r i a l s , drop i n worker morale, and p o s s i b l e l e g a l f e e s . A s h f o r d (1976) c i t e s US N a t i o n a l S a f e t y C o u n c i l estimates of d i r e c t c o s t s to employers of o c c u p a t i o n a l i l l n e s s and i n j u r y as about one per cent of the US gross n a t i o n a l product - about 10 b i l l i o n d o l l a r s per year i n 1 976. The worker and the worker's f a m i l y a l s o i n c u r c o s t s i n c l u d i n g l o s s of f u l l pay, l o s s of f;self esteem, c o s t s of p h y s i c a l p a i n and p s y c h o l o g i c a l s u f f e r i n g . I n j u r i e s o f t e n i n c r e a s e s t r e s s i n f a m i l i e s , sometimes to the extent of p r e c i p i t a t i n g m a r i t a l and f a m i l y breakdown. These events o f t e n r e s u l t i n new s o c i a l w e l f a r e c o s t s f o r s o c i e t y at l a r g e . These c o s t s which f a l l o u t s i d e the f i r m ' s p r o f i t and l o s s statements are r e f e r r e d to by economists as " e x t e r n a l i t i e s " and the e f f e c t of t h i s e x t e r n a l i z i n g of c o s t s i s a reduced i n c e n t i v e f o r firms to improve h e a l t h and s a f e t y standards and p r a c t i c e s (Manga et al.1981). O c c u p a t i o n a l d i s e a s e i s a small p r o p o r t i o n of c l a i m s handled by workers' compensation systems. Ash f o r d (1976) c i t e s US Bureau of Labour S t a t i s t i c s f i g u r e s f o r 1971-2 which r e p o r t o c c u p a t i o n a l i l l n e s s as l e s s than f i v e per cent of r e p o r t e d i n j u r i e s and i l l n e s s e s . O n e - t h i r d of those i l l n e s s e s recorded 119 were o c c u p a t i o n a l d e r m a t i t i s c a s e s . In Canada, a review of workers' compensation claims from three p r o v i n c e s by Ison (1978) demonstrated only two to seventeen per cent of f a t a l c l a i m s allowed were f o r d i s e a s e . Of permanent d i s a b i l i t y awards, 3.4 to 11.3 per cent were f o r d i s e a s e ; the m a j o r i t y of these were f o r h e a r i n g l o s s . When hear i n g l o s s c l a i m s are excluded, only 0.8 to 1.7 per cent of permanent awards i n 1976 from the three compensation boards i n v e s t i g a t e d ( A l b e r t a , Manitoba and B r i t i s h Columbia) were f o r d i s e a s e . T h i s low p r o p o r t i o n of compensated o c c u p a t i o n a l d i s e a s e cases can be compared to the high p r o p o r t i o n of premature 1 d i s a b i l i t y from d i s e a s e cases handled by the Canada Pension Plan d i s a b i l i t y pensions : 95.2 per cent are f o r d i s a b i l i t i e s r e s u l t i n g from d i s e a s e ; only 4.8 per cent are f o r d i s a b i l i t i e s r e s u l t i n g from trauma ( S t a t i s t i c s Canada, 1974 2 i n Ison, 1978). Ison comments "... while the bulk of permanent d i s a b i l i t i e s and premature deaths r e s u l t from d i s e a s e , the bulk of workers' compensation c l a i m s f o r death and premature disablement r e s u l t from trauma. There i s no obvious e x p l a n t i o n f o r t h i s c o n t r a s t . " I t i s p o s s i b l e that disablement from d i s e a s e i s s e v e r a l times that which would be i n d i c a t e d by compensation data." A s h f o r d (1976) c i t e s a NIOSH- sponsored study 3 c a r r i e d out by the U n i v e r s i t y of Washington on the prevalence of o c c u p a t i o n a l i l l - h e a l t h . Nine hundred and e i g h t workers were m e d i c a l l y assessed and over 1100 medical c o n d i t i o n s were i d e n t i f i e d . Of these, t h i r t y - o n e per cent were i d e n t i f i e d as of o c c u p a t i o n a l o r i g i n , and an a d d i t i o n a l ten per cent d e s c r i b e d as having a suggestive h i s t o r y of o c c u p a t i o n a l o r i g i n . The i n c i d e n c e of o c c u p a t i o n a l d i s e a s e was determined to be 28.4 per 100 workers. Only three per cent of the c o n d i t i o n s i d e n t i f i e d Were l o c a t e d i n workers' compensation r e c o r d s . Skin d i s e a s e s accounted f o r only eighteen per cent of c o n d i t i o n s i d e n t i f i e d , though as s t a t e d above, the US Bureau of Labour S t a t i s t i c s r e p o r t s s k i n d i s e a s e s as o n e - t h i r d of a l l o c c u p a t i o n a l i l l n e s s e s r e p o r t e d . Hearing l o s s accounted f o r twenty-eight per cent of the c o n d i t i o n s i d e n t i f i e d which compares with over h a l f of the d i s e a s e c l a i m s allowed by the three workers' compensation boards 1 Premature r e f e r s to people aged twenty to s i x t y y e a r s . 2 S t a t i s t i c s Canada. Causes of Death , Ottawa, 1974. 3 D i s c h e r D.P.,et a l . P i l o t Study f o r Development of an O c c u p a t i o n a l Disease S u r v e i l l e n c e Method, (US) HEW p u b l i c a t i o n number (NIOSH) 75-162, 1975. 1 20 i n v e s t i g a t e d by Ison (1978) and r e f e r r e d to above. There are a number of f a i r l y obvious f a c t o r s which make i t l i k e l y t h a t o c c u p a t i o n a l d i s e a s e s are under-recognized i n the compensation system. I n j u r i e s are u s u a l l y i ) d e f i n i t e i n time and p l a c e , i i ) have a d e f i n a b l e e t i o l o g y and i i i ) as a r e s u l t , g e n e r a l l y impose more or l e s s immediate consequences on the worker, the employer, and the insurance c a r r i e r (adapted from Manga et al.1981). In c o n t r a s t , o c c u p a t i o n a l d i s e a s e s u s u a l l y have l a t e n c y p e r i o d s of f i v e to f o r t y years and o f t e n have e t i o l o g i e s which are complex and/or not well-understood by the medical p r o f e s s i o n , the worker or the employer. They may be the r e s u l t of an i n t e r a c t i o n of environmental, l i f e s t y l e and o c c u p a t i o n a l hazards. These f a c t o r s , along with high workforce m o b i l i t y , l i m i t e d r e c o rds of chemicals i n use i n p r o d u c t i o n processes and l i m i t e d knowledge by the worker of what m a t e r i a l s he/she i s working with, r e s u l t i n a much lower l i k l i h o o d of assignment of r e s p o n s i b i l i t y f o r an o c c u p a t i o n a l d i s e a s e to a workplace exposure by the worker or h i s / h e r p h y s i c i a n , and t h e r e f o r e a much lower l i k l i h o o d of an acc o u n t i n g of i n d u s t r i a l d i s e a s e i n the compensation system. 121 APPENDIX C - OCCUPATIONAL HEALTH AND SAFETY - ECONOMIC THEORY In a p e r f e c t l y c o m p e t i t i v e market model, u s u a l l y the normative model i n economic s t u d i e s , i t i s assumed t h a t : - f i r m s maximize p r o f i t s ( a n d - t h e r e f o r e minimize c o s t s ) ; - i n d i v i d u a l s maximize u t i l i t y (measured by r e a l income); - both workers and firms are f u l l y informed about h e a l t h and s a f e t y hazards; - i n f o r m a t i o n i s c o s t l e s s to o b t a i n and process; - a l l c o s t s are i n t e r n a l i z e d ( i . e . no c o s t s generated by p r i v a t e e n t e r p r i s e are absorbed by any i n d i v i d u a l or i n s t i t u t i o n other than the e n t e r p r i s e i t s e l f ) ; - there i s p e r f e c t labout m o b i l i t y and f u l l employment; - firms and workers are p r i c e t a k e r s . (adapted from Manga et al.,1981 and Reschenthaler, 1979) Within t h i s model, i t can be p r e d i c t e d that a r a t i o n a l worker w i l l only work at employment which compensates adequately f o r any r i s k d i f f e r e n t i a l i n v o l v e d i n the work. Firms w i l l f i n d i t necessary to o f f e r wage premiums which compensate f o r expected l o s s e s or the c o s t of insurance a g a i n s t expected l o s s e s . R e c i p r o c a l l y , improvements i n working c o n d i t i o n s which reduce hazards would meet with agreement by workers to reduce wage premiums to r e f l e c t new hazard l e v e l s . E q u i l i b r i u m would be reached where the marginal c o s t of reducing hazard i n the i n d u s t r y equals the marginal savings from such a r e d u c t i o n . In the model, a l l c o s t s of o c c u p a t i o n a l hazards would be recognized as p a r t of p r o d u c t i o n c o s t s and hence be passed on to consumers i n p r i c e s , t h e r e f o r e adding to the p r i c e of products which are hazardous to produce. Higher p r i c e s f o r goods more hazardous to produce would reduce demand. Manga et a l . (1981) review the e m p i r i c a l data on the extent to which compensating wage d i f f e r e n t i a l s e x i s t f o r hazardous work. G e n e r a l l y , a p o s i t i v e r e l a t i o n s h i p between wage ra t e and some measure of hazard ( v a r i o u s l y measured by f a t a l i t y r a t e s , i n j u r y r a t e s , s e v e r i t y r a t e s , workers' p e r c e p t i o n of hazard) i s observed, although some s t u d i e s have found a negative r e l a t i o n s h i p or a d i f f e r e n t r e l a t i o n s h i p depending upon the race of the worker ( p o s i t i v e f o r non-white males, no s i g n i f i c a n t d i f f e r e n t i a l f o r white males). One study c i t e d by Manga et a l . (1981) shows an i n c r e a s e i n r i s k premium in "very r i s k y " o ccupations when unions were p r e s e n t . However, Manga et a l . (1981) p o i n t out that problems e x i s t not only with the d i f f e r e n t measures of hazard used but a l s o with the r e l i a b i l i t y and accuracy of data on i n j u r y and d i s e a s e r a t e s . Other problems with these s t u d i e s are a l s o mentioned. The c o n c l u s i o n reached by Manga et a l . (1981) i s that r i s k premiums do e x i s t , but that the market i s " f a r from p e r f e c t . That i s , the market does not generate s u f f i c i e n t r i s k premiums to achieve s o c i a l l y optimal l e v e l s of work i n j u r i e s " (page 74). They a l s o s t a t e that even people who s t r o n g l y support a market 1 22 paradigm s o l u t i o n to the r e d u c t i o n of o c c u p a t i o n a l i n j u r y concede that the market paradigm i s l e s s v a l i d f o r g e n e r a t i n g s o c i a l l y optimal l e v e l s of o c c u p a t i o n a l d i s e a s e . T h i s s i t u a t i o n i s known as "market f a i l u r e " . There i s an underinvestment by firms i n o c c u p a t i o n a l h e a l t h and s a f e t y . A number of f a c t o r s are i n v o l v e d , among them the f a c t t h a t the economy does not normally experience f u l l employment, and labour m o b i l i t y i s not as f l u i d as i s necessary f o r the market paradigm to work e f f i c i e n t l y . These f a c t o r s s e p a r a t e l y and together i n c r e a s e the v u l n e r a b i l i t y of some workers, causing them to accept wages which do not f u l l y compensate for the r i s k s assumed. Less s a f e t y i s then p r o v i d e d due to these i m p e r f e c t i o n s of the market. Another major reason f o r market f a i l u r e i n the area of o c c u p a t i o n a l h e a l t h and s a f e t y i s the f a i l u r e of the p e r f e c t knowledge and f u l l i n f o r m a t i o n assumption. Quantity and q u a l i t y of i n f o r m a t i o n on i n d u s t r i a l hazards, p a r t i c u l a r l y those a s s o c i a t e d with o c c u p a t i o n a l d i s e a s e , i s not p e r f e c t . Not only i s there a l a c k of any i n f o r m a t i o n at a l l on many hazards (e.g. many chemicals i n d i v i d u a l l y and i n combination used i n p r o d u c t i o n ) , c o n t r o v e r s y e x i s t s w i t h i n the s c i e n t i f i c and medical communities about what i s known. S o p h i s t i c a t e d r e s e a r c h i s r e q u i r e d to assess many of these p o t e n t i a l hazards; workers and f i r m s f o r the most part cannot simply l e a r n through exp e r i e n c e . Where s c i e n t i f i c i n f o r m a t i o n does e x i s t , a c c e s s i n g i t i s a l s o a major problem. I t c o s t s money to p r o c e s s , i n t e r p r e t and communicate i n f o r m a t i o n . Obviously b i g firms and b i g unions.are i n a b e t t e r p o s i t i o n to o b t a i n and use i n f o r m a t i o n than small f i r m s , small unions or i n d i v i d u a l workers. Even so, there are l i m i t e d i n c e n t i v e s f o r even b i g f i r m s or unions to generate i n f o r m a t i o n . The c o s t s are high and the nature of i n f o r m a t i o n i s such that i t i s more of a p u b l i c good than a p r i v a t e good ( i . e . i t i s r a r e l y s a l e a b l e at a p r o f i t a b l e r a t e ; t h i s r e f e r s to i n f o r m a t i o n about hazards, not patents f o r chemicals or s a f e t y equipment). The i n f o r m a t i o n problem would be l e s s severe as a cause of market f a i l u r e i f f u l l compensation f o r i n j u r y or d i s e a s e were a v a i l a b l e through the c o u r t s or the compensation system when i t i s not adequately b u i l t i n t o wages (as we have seen i t i s n o t ) . The establishment of workers' compensation systems at the turn of the century was a r e s u l t of the i n e f f e c t i v e n e s s of the c o u r t s to e f f i c i e n t l y or adequately p r o v i d e compensation and a l s o now p r o h i b i t s use of the c o u r t s f o r most i n d u s t r i a l d i s e a s e and i n j u r y c l a i m s . As a r e s u l t , f i r m s , e i t h e r d i r e c t l y or i n d i r e c t l y through the workers' compensation systems, do not bear the f u l l c o s t s of o c c u p a t i o n a l d i s e a s e and i n j u r y . Instead, a good p o r t i o n of the c o s t s are borne by the a f f e c t e d worker and h i s or her f a m i l y , and by s o c i e t y at l a r g e . Attempts to estimate the s i z e of the hidden c o s t s have many problems. Some of the problems r e l a t e simply to l a c k of 123 i n f o r m a t i o n , not only about a l l i n d i r e c t c o s t s but a l s o t r u e r a t e s of i n j u r y and d i s e a s e . However, educated guesses of the hidden c o s t s range from 3.5 to 5 times d i r e c t c o s t s (Manga et a l . , 1981). The other major f a c t o r r e l a t e d to market f a i l u r e i n o c c u p a t i o n a l h e a l t h and s a f e t y i s known as the e x t e r n a l i t i e s f a c t o r . Hazards to the p u b l i c at l a r g e generated by firms (e.g. a i r , water, noi s e p o l l u t i o n ) r e s u l t from underinvestment in p o l l u t i o n c o n t r o l . Real p r o d u c t i o n c o s t s would r e f l e c t the c o s t s necessary to leave the environment and the p u b l i c unharmed. Where the s o c i e t y e i t h e r bears the e f f e c t s of p o l l u t i o n or c l e a n s up hazards in the environment o r g i n a l l y generated by f i r m s , the f i r m has s u c c e s s f u l l y e x t e r n a l i z e d a p r o d u c t i o n c o s t , and the c o m p e t i t i v e market i n c e n t i v e to l i m i t p o l l u t i o n i s l o s t . U s u a l l y improved h e a l t h and s a f e t y standards f o r workers r e s u l t i n reduced hazards f o r the p u b l i c , and v i c e v e r s a . Market f a i l u r e from e i t h e r of these p o i n t s of view thus impacts upon the other p a r t y . The r e s u l t of market f a i l u r e i n t h i s area i s resource m i s a l l o c a t i o n , s i n c e a r t i f i c i a l l y lower c o s t s of p r o d u c t i o n w i l l r e s u l t in a r t i f i c i a l l y low p r i c e s and r e s u l t i n g o v e r p r o d u c t i o n . In a d d i t i o n there i s the f a c t t h a t the c o s t s , i n the form of i n d u s t r i a l i n j u r y and d i s e a s e , are not shared e q u a l l y by a l l consumers who b e n e f i t from lower product p r i c e s . T h i s r e p r e s e n t s a t r a n s f e r of r e a l wealth from the v i c t i m of o c c u p a t i o n a l i n j u r y and d i s e a s e to the consumer. Although e q u i t y i s u l t i m a t e l y a p o l i t i c a l concept, economics can be very u s e f u l i n i l l u m i n a t i n g s p e c i f i c a l l y who b e n e f i t s and who pays as a r e s u l t of present p o l i c i e s . What i s i n t e r e s t i n g to note i n t h i s b r i e f n e o - c l a s s i c a l economic overview i s that t h i r d p a r t y (i.e.governmental) i n t e r v e n t i o n i s necessary i n t h i s market i n some form to overcome inherent problems of market f a i l u r e (Economic C o u n c i l of Canada, 1981). Forms of i n t e r v e n t i o n c o u l d vary, a d d r e s s i n g v a r i o u s l y the i n f o r m a t i o n a l inadequacies, the c o s t s of p r o c e s s i n g i n f o r m a t i o n , or the e x t e r n a l i z a t i o n of some of the c o s t s of d i s e a s e and i n j u r y , f o r example. However, the p u b l i c d i s c u s s i o n on these i s s u e s i s c h a r a c t e r i z e d as a p o l i t i c a l one f o r the most p a r t , r a t h e r than a s o l e l y r a t i o n a l one, and labour's demands f o r more adequate compensation of o c c u p a t i o n a l i n j u r y and d i s e a s e v i c t i m s or a g r e a t e r part f o r workers in design of r e g u l a t i o n s and monitoring of workplaces i s g e n e r a l l y p e r c e i v e d as a s o c i a l i s t i c or l e f t -l e a n i n g p l a t f o r m . In f a c t , such demands can be seen to emanate from a n e o - c l a s s i c a l c o m p e t i t i v e market model. The r e a l p o l i t i k of the o c c u p a t i o n a l h e a l t h and s a f e t y arena r e s u l t s i n government d e s i r i n g to appear not to favor l a b o u r ' s p r o p o s a l s over employers', and t h e r e f o r e no s i g n i f i c a n t change i n the s o c i a l o r g a n i z a t i o n of o c c u p a t i o n a l h e a l t h and s a f e t y 1 24 programs occur. Thus, s e r i o u s market f a i l u r e occurs,, r a t h e r than r a t i o n a l p o l i c y f o r m u l a t i o n which might l e a d to s i g n i f i c a n t a l t e r a t i o n i n resource a l l o c a t i o n or d i s t r i b u t i o n of c o s t s and b e n e f i t s from t h e i r c u r r e n t s t a t e . 

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