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Understandings of cancer genetics : the case of colon cancer Small, R. Dan 2003

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UNDERSTANDINGS OF CANCER GENETICS: THE CASE OF COLON CANCER by R. Dan Small B.A., SIMON FRASER UMVERSITY, 1989 B.A.,SIMON FRASER UNIVERSITY, 1994 M.PHIL., UNIVERSITY OF CAMBRIDGE, 1996 A THESIS SUBMITTED TO THE FACULTY OF GRADUATE STUDIES IN PARTIAL FULFILLMENT OF THE REQUIREMENTS OF THE DEGREE OF DOCTOR OF PHILOSOPHY Department of Anthropology and Sociology The University of British Columbia We accept this thesis as conforming To the required standard THE UNIVERSITY OF BRITISH COLUMBIA 2003 © R. Dan Small 2003 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of jA;isffh sopo A . ^ ^ . - T o e / „ f ^ The University of British Columbia Vancouver, Canada Date / DE-6 (2/88) ABSTRACT More men and women die every year from colorectal cancer (CRC) in Canada than from any other cancer with the exception of lung cancer (Canada 1997). The focus of this study is on the most common form of hereditary cancer in both men and women: hereditary nonpolyposis colorectal cancer (HNPCC) (Kinney, et al. 2000). The fundamental thesis of this study is that individuals who are genetically at risk for HNPCC employ healing emplotment, a narrative strategy, for constructing their autobiography and managing the lifelong threats to themselves posed by this unique cancer. This concept builds on other work in medical anthropology on illness narratives and therapeutic emplotment that focuses on the ways that patients and practitioners utilize narrative to interpret illness and therapies (DelVecchio-Good, et al. 1994; Good and Good 1994; Gordon and Paci 1997; Kleinman 1988; Mattingly 1989; 1994; 1998; Saris 1994; 1995; 1996). I argue that personhood is at the very heart of the healing process. Personhood is as a process for describing the ongoing negotiation between the self as the centre of experience and the cultural forces that surround it. Furthermore, just as Bourdieu (1990; 1995; 1999) discusses forms of symbolic capital in society, I have expanded upon the notion by recognizing the role of psychological and emotional resources in the concept of emotional capital. Emotional capital flows from personal connections with others: lovers, family, friends and it holds absolute value relative to all other forms of capital during fateful moments. The interviews in this study indicate that emotional capital is a fundamental part of individuals' interpretations of their experience of genetic risk. Using ethnography and open-ended interviews with 33 individuals from 15 families at risk for HNPCC, this study examines the unique aspects of hereditary colon cancer and investigates the dynamic process people engage in to address the social and clinical threats posed by HNPCC. As well, 18 medical practitioners, primarily specialists in oncology, were also interviewed in order to obtain insight into clinician understandings of HNPCC and the relationship between medicine and clinical genetics. TABLE OF CONTENTS ABSTRACT ii TABLE OF CONTENTS iii LIST OF TABLES vi LIST OF FIGURES vii ACKNOWLEDGEMENTS viii C H A P T E R O N E : I N T R O D U C T I O N T O U N D E R S T A N D I N G S O F C A N C E R G E N E T I C S : T H E C A S E O F C O L O N C A N C E R 1 INTRODUCTION 1 ANALOGOUS QUALITATIVE RESEARCH 2 BACKGROUND 3 BRITISH COLUMBIA CANCER AGENCY (BCCA) 3 HEREDITARY CANCER PROGRAM 4 THE RESEARCH SETTING 5 GI Tumor Group 5 Colon Cancer Support Group 6 Regional Hospitals 7 Other Jurisdictions 7 RECRUITMENT 8 METHODS 13 Person-Centred Ethnography 13 Storytelling in Open-ended Interviews 16 MEDICAL ANTHROPOLOGY 17 SPORADIC COLON CANCER 18 CLINICAL SURVEILLANCE 19 HEREDITARY FORMS OF COLORECTAL CANCER 20 QUALITATIVE RESEARCH ON ADVANCES IN GENETICS 22 RESEARCH ON COLON CANCER 29 SOCIAL AND CLINICAL DYNAMICS OF COLON CANCER 31 CONCLUSIONS 32 C H A P T E R T W O : T O W A R D S A N A N T H R O P O L O G Y O F T H E P E R S O N 36 THERAPEUTIC EMPLOTMENT AND HEALING EMPLOTMENT 37 NARRATIVES IN MEDICAL ANTHROPOLOGY 39 PERSONHOOD 45 REFLEXIVE PROTECTION OF THE PERSON 48 FATEFUL MOMENTS AND SECURITY OF THE SELF 50 INSTITUTIONAL CONSECRATION 59 SOCIAL CAPITAL 62 MEANINGFULNESS AND MEANINGLESSNESS 64 CREATING MEANINGFULNESS: EMOTIONAL CAPITAL 66 C H A P T E R T H R E E : T H E C L I N I C A L C O N T E X T : T H E B C C A N C E R A G E N C Y , H O S P I T A L S A N D T H E W I D E R H E A L T H C A R E E N V I R O N M E N T 72 THE HEREDITARY CANCER PROGRAM 73 INSTITUTIONS AS BUNDLES OF SERVICES THAT CONSECRATE CLINICAL ROLES 76 TYPES OF RISK 79 Epidemiological and Clinical Risk 79 Lived Risk 81 Institutional Risk 84 THE GI TUMOR GROUP 86 THERAPEUTIC VERSUS HEALING EMPLOTMENT AND THE OWNERSHIP OF HEALTH D A T A 87 ENTERING THE SYSTEM AS A PATIENT 88 INCREASED SPECIALIZATION 89 iv PERCEPTIONS OF THE RESEARCHER 91 PATENTS FOR GENETIC MUTATIONS 93 THE IMPACT OF THE PHARMACEUTICAL INDUSTRY ON L O C A L SUPPORT 95 DIFFERING TIME HORIZONS, EXPECTATIONS, STRATEGIES AND ACCOUNTABILITY: RESEARCH STUDIES VERSUS CLINICAL SERVICES 99 C H A P T E R F O U R : I N T R O D U C T I O N T O P A T I E N T A N D F A M I L Y N A R R A T I V E S 107 BACKGROUND 108 PERCEPTIONS OF THE RESEARCHER 112 DESCRIBING CANCER IN THE ILLNESS NARRATIVES 114 THREATS TO EMOTIONAL INOCULATION A N D PROPHYLACTIC SURGERY 118 THREATS TO PERSONHOOD FROM NARRATIVES ABOUT CANCER IN THE WIDER COMMUNITY: THE BIG " C " : Y O U ' R E GOING TO DIE 120 GENDERED ILLNESS: COLON CANCER IS A M A L E DISEASE AND BREAST CANCER IS A FEMALE DISEASE 125 EVALUATING THE SYSTEM: THE PERSPECTIVE OF FAMILIES WITH H N P C C 127 THE GOLD STANDARD OF MEDICAL CARE AND THE SYMBOL OF LIFE FOR PEOPLE AT RISK FOR H N P C C : THE COLONOSCOPY 134 ENHANCING THE SECURITY SYSTEM OF PERSONHOOD UTILIZING GENETICS COUNSELING A N D GENETICS TESTING 137 THE INFLUENCE OF LIVING IN A N U R B A N VERSUS A RURAL SETTINGS 144 CONFRONTING FATEFUL MOMENTS A N D THE POSSIBILITY OF DEATH 145 THE EXPERIENCE OF CHEMOTHERAPHY 146 REFLEXIVITY AND FORESHADOWING ILLNESS: A SENSE OF EXPECTATION 149 RISKS TO PERSONHOOD FROM GENETICS TESTING A N D COUNSELING 152 CO-EXISTENCE OF LAY-PERSPECTIVES A N D GENETICS 156 LAYPESPECTIVES ON SKIPPING GENERATIONS 158 SELECTION AND PRE-SELECTION 159 SUPPORT GROUPS AS A THREAT TO PERSONHOOD 163 C H A P T E R F I V E : T H E C O N S T R U C T I O N O F P E R S O N H O O D 167 THREAT TO PERSONHOOD AND THE SHAME OF COLON CANCER 170 THREATS TO PROTECTIVE COCOON OF PERSONHOOD B Y CANCER IN GENERAL 175 GENETIC GUILT AND SHAME: INHERITED RESPONSIBILITY AND B L A M E 177 USING GENETICS TO DEFLECT SHAME 181 REBUILDING THE PROTECTIVE COCOON OF THE PERSON AND REBUILDING TRUST UTILIZING GENETICS SERVICES 182 STRATEGIES FOR PROTECTING THE PROTECTIVE COCOON OF PERSONHOOD 185 THREATS OR A I D TO PERSONHOOD: THE CLINICAL R E A L M 186 "IT'S A CHEMO K I N D OF A D A Y " : ILLNESS IN THE LIFE WORLD 191 CULTURAL IDEAS ABOUT CANCER AND PERSONHOOD 193 STRATEGIES FOR ADDRESSING THE RISK TO PERSONHOOD 195 NARRATING IDEAS ABOUT THE CAUSES OF H N P C C AS PART OF HEALING 200 HEALING EMPLOTMENT ADDRESSING THE IMBALANCE OF POWER OF CLINICIANS 213 CREATING AGENCY THROUGH SURVEILLANCE A N D SUSPICION 215 AGENCY THROUGH KNOWLEDGE 218 ADDRESSING FORTUNE AND THE ULTIMATE EXTERNALIZING FACTOR: DEATH 223 " W H E N Y O U R TICKET ' s U P ; Y O U R TICKET'S U P " 223 THE REFLEXIVE DYNAMICS OF PERSONHOOD 225 CREATING POWER THROUGH THE CANCER EXPERIENCE 229 COLONIZING THE FUTURE THROUGH H E A L T H PROMOTION AND ADVOCACY 231 WHOSE RESPONSIBILITY IS IT TO PROMOTE HEALTH? 235 THE REFLEXIVE PROJECT OF THE PERSON 236 EMOTIONAL CAPITAL, PURE RELATIONSHIPS AND CHANGING TIME HORIZONS 238 C H A P T E R STX: C L I N I C A L N A R R A T I V E S 243 CONNECTING WITH THE CLINICIANS 245 V Two CULTURES: GENETICS AND MEDICINE 246 CLINICAL NARRATIVES: UNDERSTANDINGS OF HNPCC 253 INCIDENCE OF H N P C C I N B C 261 COLONOSCOPIES A N D SCREENING PROTOCOLS 262 CLINICAL NARRATIVES ABOUT RISKS TO PERSONHOOD 264 CLINICIAN KNOWLEDGE OF PROPHYLAXIS AND THE THREAT TO PRACTICAL CONSCIOUSNESS POSED B Y THE COLECTOMY AND THE COLOSTOMY B A G 270 INSTITUTIONAL A N D SYSTEMIC ARRANGEMENT OF H E A L T H CARE 277 DISCLOSURE OF CANCER 283 DISCLOSURE OF HNPCC DIAGNOSIS 285 SHARING INFORMATION: DIFFERENT NARRATIVES 288 FAMILY HISTORY A N D DIAGNOSIS 290 PERCEPTIONS OF GENETICS COUNSELING A N D TESTING 297 CHAPTER SEVEN: HEALING VS TREATING 304 SOCIAL MEANING OF A DOOR KNOB 324 LIMITATIONS OF M Y STUDY ...327 APPLICATION AND GENERAL SIGNIFICANCE 329 ETHICAL CONSIDERATIONS 329 REFERENCES 331 APPENDICES 341 APPENDIX I. ESTIMATED INCIDENCE AND MORTALITY RATES FOR CANCER PER 100,000 341 APPENDIX II: G E N E R A L R E S E A R C H QUESTIONS 342 APPENDIX III: C O L O R E C T A L C A N C E R SCREENING TECHNIQUES 348 Digital Rectal Exam 348 Fecal Occult Blood Testing 348 Barium Enema 348 Flexible Sigmoidoscopy 348 Virtual Colonoscopy 348 APPENDIX IV: PATIENT INFORMATION A N D C O N S E N T F O R M : 349 APPENDIX V: INFORMATION A N D CONSENT F O R M FOR M E D I C A L PROFESSIONALS: 352 vi LIST OF TABLES TABLE 1: PARTICIPANTS: PEOPLE AT RISK FOR H N P C C 14 TABLE 2: EDUCATION LEVEL 15 TABLE 3: PARTICIPANTS: CLINICIANS AND SPECIALISTS 16 vii LIST OF FIGURES FIGURE 1: PEDIGREE 13 FIGURE 2: PEDIGREE 14 FIGURE 3: B C C A 77 FIGURE 4: FAMILY 80 FIGURE 5: MYRIAD TECHNOLOGIES 97 FIGURE 6: NEWS ARTICLES ON KATIE COURIC AND PAMELA WALLIN 100 Vlll ACKNOWLEDGEMENTS First and foremost, I would like to thank all the people who participated in this study. I am indebted to the family members at risk for and living with HNPCC who shared their perspectives and wisdom so generously. I am grateful to the clinicians who so honestly shared their understandings of the issues associated with HNPCC in medicine and genetics. Special thanks to Karen Pannabaker, Jenna Scott, Pardeep Kaurah and Myra Micek for referring subjects to my study. Thanks to Charmaine Kim-Sing for holding the clinical gate open so that I could meet the clinicians who kindly participated in this study. I would like to say another special thank you to all the members of my committee: Dr. William McKellin, Dr. Julie Cruikshank, Dr. Doug Horsman and Dr. Nancy Waxier-Morrison for their patience, guidance and support as I met them at the busy intersection of their disciplines. I have been fortunate to benefit from multidisciplinary feedback from the vantage points of a medical anthropologist, an anthropologist with expertise in oral tradition, a sociologist with expertise in the sociology of medicine and a physician with specialization in pathology and medical genetics. I would like to express my gratitude to my supervisor, Dr. William McKellin, who has provided me with many opportunities, expanded my thinking in many areas of anthropology and kept me on track all the way. I would like to acknowledge Professor Ian Whitaker who was the teacher for my first anthropology course. His narratives about anthropology in the field and at home inspired me to read for my M.Phil. at the University of Cambridge and I remain thankful for his kind guidance on both sides of the Atlantic. I am eternally grateful for his mentorship, encouragement and friendship. Thank you for the encouragement of all my friends who encouraged me along the way especially Eric McKechnie, Jack Bibby and Robert Winram. I reserve special thanks for Mark Townsend and the Portland family for their support and patience while I completed this project. I am grateful to my father, Tony Small, for his encouragement over the years and his belief not only in higher education and his fatherly faith in my abilities. Thanks to my son, Cole for his patience while his father burns the candle at both ends. And, now, we can finally learn to play guitar together. Finally, thank you to my other self: Jenny Kwan for her support and love through the writing of this dissertation. It is she who has taught me about emotional capital and pure relationships. 1 CHAPTER ONE: INTRODUCTION TO UNDERSTANDINGS OF CANCER GENETICS: THE CASE OF COLON CANCER Introduction More men and women die every year from colorectal cancer (CRC) in Canada than from any other cancer with the exception of lung cancer (Canada 1997). The focus of this research is on the most frequent form of hereditary cancer in both men and women: hereditary nonpolyposis colorectal cancer (HNPCC) (Kinney, et al. 2000). This study suggests that HNPCC is unique among hereditary illnesses in terms of its social and clinical dynamics and that people at risk for it actively manage the impact of this illness in their lives before they themselves are actually diagnosed with the disease. The fundamental thesis of this study is that people at risk for HNPCC knowingly engage in healing emplotment: a narrative strategy for constructing their autobiography and managing the lifelong threats to themselves as persons in society posed by this unique cancer. This concept is developed from work on therapeutic emplotment in medical anthropology that focuses on the process by which practitioners and patients actively make use of narrative, with a plot-like structure, to help them guide and interpret therapies, treatments and clinical approaches to serious illness (Mattingly 1989; 1994). I argue that personhood is at the very heart of the healing process and that healing emplotment describes the ways that individuals manage the risks posed by HNPCC. Personhood is as a process for describing the ongoing negotiation between the self as the centre of experience and the cultural forces that surround it. For the people interviewed in this study, the significance of the risk for HNPCC is immense, and it does not present itself in their lives simply as a discrete disease experience. This study looks at the unique aspects of hereditary colon cancer and examines the dynamic process people engage in to 2 address the social and clinical threats posed by HNPCC using ethnography and open-ended interview techniques with 33 individuals from 15 families at risk for HNPCC. As well, 18 medical practitioners, primarily specialists in oncology, were also interviewed in order to obtain insight into clinician understandings of HNPCC and the relationship between medicine and genetics. Another concept, emotional capital, is also introduced to interpret the results of this study. Emotional capital is derived from personal connections with important others: lovers, family, friends and it holds absolute value relative to all other forms of capital during fateful moments. It is a form of symbolic capital that holds absolute value relative to other forms of social capital developed elsewhere (Bourdieu 1990; 1995; 1999). Emotional capital provides the foundation for individuals' interpretations of experience and the clinical narratives. This concept will be developed in Chapter Two. Analogous Qualitative Research This study grows out of a body of research into the social and personal impacts analogous to late onset conditions such as Huntington disease (Bloch, et al. 1992; Chapman 1992; Cox 1999; Huggins, et al. 1992; Kessler and Bloch 1989; McKellin and Burgess 1995; Tibben, et al. 1992), Alzheimer's disease (McKellin and Burgess 1995; Smith 2000) and Breast and Ovarian Cancer (Gilbar and Florian 1991; McKellin and Burgess 1995; Hallowell 1999; Parker 1995; Richards, et al. 1995; Waxier-Morrison, et al. 1991) that examine the psychosocial aspects of illness. Its methods are taken from medical anthropology and it is influenced by research on illness narratives in this field (DelVecchio-Good, et al. 1994; Good and Good 1994; Gordon and Paci 1997; Kleinman 1988; Mattingly 1989; 1994; 1998; Saris 1994; 1995; 1996). The theoretical framework 3 for the study has been developed from writings about the relationship between illness experience, biology and suffering (Cassel 1982; Goffman 1986 (1963)) as well as some key theoretical debates about the relationship between individuals and culture (Bourdieu 1990; Bourdieu 1995; 1999; Giddens 1997). Background This is a very interesting time for research into hereditary colon cancer in this province in that the early genetic detection available in some regions of Canada is not available in British Columbia. This research examines people's experiences with HNPCC, how they cope with this disease in their families and how clinicians treat them before genetic testing is available. At present, families at risk for HNPCC in BC cannot access genetic testing services that could confirm their risk status unless they are willing to pay for this service privately in the United States. Some families know this and some do not. British Columbia Cancer Agency (BCCA) All of the individuals at risk for HNPCC and the oncologists interviewed in this study had some connection with the BCCA. The BCCA provides care for people faced with cancer through four regional cancer centres located in Victoria, Vancouver, Kelowna and Surrey (BCCA 1999). In partnership with regional hospitals, each centre provides diagnostic and assessment services, radiation, chemotherapy and follow-up care. Surgery for cancer occurs at hospitals throughout the province. The treatment of patients through the BCCA is broken into key areas of specialization called tumor groups. These tumor groups focus on specific types of cancer such as the Gastrointestinal Tumor Group (GI Tumor Group). The GI Tumor Group focuses on cancers that occur in the 4 gastrointestinal tract such as hereditary colorectal cancer. Within these groups, key specialists (radiation oncologists, medical oncologists, radiation oncologists) provide treatment. Referrals to the Cancer agency are made by a physician. Hereditary Cancer Program This study was launched under the umbrella of the Hereditary Cancer Program (HCP). The HCP is a joint initiative of the BCCA and the BC Provincial Medical Genetics Program (BCCA 1999). The HCP provides information and counseling regarding hereditary cancers to people and families with strong histories of cancer. During the course of this study, they provided genetic testing for hereditary breast cancer but not for HNPCC. People are referred to the HCP by their physician. As part of the field research, I participated as a member of the Hereditary Cancer Program Case Conference Committee for four years. The HCP provided clinical background for the study as well as a glimpse into the interplay between clinical genetics and medicine. The HCP is a multidisciplinary team of professionals made up of oncologists, surgeons, nurses, laboratory technicians, genetic counselors, a medical anthropologist, a philosopher bio-ethicist and graduate students from various disciplines. The HCP reviews the cases of individuals with family cancer syndromes and often makes decisions about who receives genetic services and how such services are to be delivered. My analysis of the interviews with oncologists and family members has been informed by the contextual research that I conducted at the HCP.1 1 Fluency in the language of the groups under study increases my access to and understanding of important data (Bernard 1995). In this case, medical practitioners applied the languages of genetics and medicine to construct their conceptual world about HNPCC. The process, by which the reality of genetic illness and medicine is assembled, served as a point for analysis in this research project. I attempted to familiarize myself with much of the terminology associated with the genetics of HNPCC through background reading (and by attending clinical conferences) and by being immersed in the field itself, as a participant observer, to observe language as it is being used in a clinical context. 5 The Research Setting Upon receiving ethical approval for the study at both the BCCA and the University of British Columbia, attempts were made to recruit participants for the study from three key areas: • The Hereditary Cancer Genetics Counseling Programs in Vancouver and Victoria • The Colon Cancer Support Group • The GI Tumor Group GI Tumor Group The GI Tumor Group is a group of clinicians, mostly oncologists, at the BCCA that specialize in treating diseases of the gastrointestinal tract. The group meets weekly in order to discuss problematic or unusual cases. The group seeks input from key specialties of oncology on the treatment, management and prognosis of diseases in particular patients. HNPCC is one of the unusual diseases that occurs in the gastrointestinal tract that would be discussed by the GI group. I observed many of the GI Tumor meetings over the course of two years. These meetings provided some insight into the institutional arrangements of the BCCA in terms of tumor groups. It also provided a look at the clinical specialties of oncology. In the end, some of the participants in the GI Tumor Group were interviewed for the study. A discussion of the interviews with clinicians from the GI Tumor Group as well as an analysis of their weekly meetings is provided in the chapters on the Institution and Clinical Narratives of this thesis. Initially, it was hoped that some of the oncologists interviewed for the study, especially those from the GI Tumor Group, would refer some of their patients to the study for interviews. This did not happen for several reasons. Firstly, many oncologists 6 do not distinguish between HNPCC and sporadic colon cancer with regard to treatment. Most do not track HNPCC and some are not sure whether they have ever treated a patient with HNPCC. When questioned in interview, many interview participants pause to think about the epidemiological likelihood that they have treated someone with HNPCC and then conclude that they probably have, but many are not sure. Therefore, it became clear that most oncologists could not refer patients with HNPCC because they do not track them. Genetics was not seen as relevant to the everyday practice of medicine for these clinicians. It was understood to be the responsibility of another program or of someone else. More particularly, addressing it was seen as the duty of the HCP. This appeared to be a part of the institutional arrangement of the BCCA and health care services. These arrangements will be examined in Chapters Three and Six. In the end, no referrals came from GI Tumor Group or from any of the physicians interviewed. A basic question emerged in the early research: 'where are all the HNPCC families?' This question was directly asked of clinical participants in the interviews and their responses are examined in chapter six. Colon Cancer Support Group I also gathered information from the individuals who tried to form a support group. The Colon Cancer Support Group had its first meeting as this research project officially began after my comprehensive examinations. I attended the first few meetings that were sparsely attended by less than half a dozen people each time. The group was typically comprised of between two and four people who had been diagnosed with colon cancer in addition to myself and an oncology nurse. After only four meetings the group ceased to meet after the main initiator of the group, a retired man who had experienced 7 colon cancer, began to experience some health complications and discontinued his involvement. Recruitment from this area was limited to two participants who were interviewed before the collapse of this fledgling group. Regional Hospitals The study began in the offices of oncologists who were interviewed in order to gain a sense of the clinical perspective and the impact of clinical genetics on medicine. None of these oncologists referred their patients to my study. In the course of my research I observed two distinct though interrelated cultures2: the culture of medicine and the culture of clinical genetics. I was particularly interested in the impact of these two cultures on the experiences of patients and families. I interviewed patients and family members in their homes and clinicians in their work environment. Other Jurisdictions The field research also included travel to other jurisdictions in order to acquire a sense of the national and international context with regard to research and services relating to HNPCC. Within Canada, a trip to the Genetics Counseling Program at Mount Sinai Hospital in Toronto, Ontario, was taken in order to contrast BC with a province that provides genetic testing and counseling services for HNPCC. Outside Canada, a trip to the United Kingdom included visits to the Centre for Family Research at the University of Cambridge and Addenbrooke's Hospital in Cambridge England3. Professor Martin 2 Influenced by interpretive anthropology, I see culture as a collectively understood system of meaning that social actors utilize to symbolically construct their semantic worlds. I do not intend to reify the notion of culture here. There appear to be hot spots of meaning negotiation that occur in medicine and genetics that sometimes overlap (especially in the HCP) but are nevertheless, as a rule, disunited. This issue will be discussed more fully in Chapter 3. 3 The research trip to England also provided an international comparison point with regard to academic thinking about genetic and clinical services for families at risk for HNPCC. Dr. A. Jamie Saris, Department of Anthropology at St. Patrick's College in Maynooth, Ireland was also visited in order to 8 Richards, Head of the Centre and a leader in research into the psychosocial effects of hereditary cancer syndromes, provided an overview of the relevant work in the United Kingdom. Dr. David Huntsman, a pathologist and geneticist, provided an overview of genetic testing and medical research into HNPCC at Addenbrookes Hospital. Local clinics that provide support services for families with hereditary disorders have been in existence in England for fifty years and genetic testing for HNPCC is available throughout all of England without a lengthy waiting period. Ontario has had a colon cancer registry since the 1980's and offers province wide genetic testing and counseling for HNPCC for Ontario residents. Recruitment Initially, it was very difficult to connect with patients and families affected by HNPCC. According to epidemiological estimates there should have been many families with HNPCC but no one seemed to be tracking their existence. The HCP was not providing testing for HNPCC so oncologists did not appear to be consistently referring patients to the program. My interviews with oncologists soon revealed that they were not distinguishing patients with HNPCC from those with sporadic colon cancer. Furthermore, those families who were thought by oncologists to have HNPCC were not being told about this likelihood. Rather, they were more likely told that they had a strong family history or a family cancer syndrome. The question that was ever-present in the early part of the research was where are all the HNPCC families and how do I connect with them? engage in a face to face theoretical discussion about illness narratives, institutional narratives and cultural erasures as they might apply to the study of inherited susceptibility to illness. 9 The study started out by examining the notion of lay-perspectives4 in comparison with professional perspectives. Ultimately, this turned out to be a problematic dualism in light of the complexity of lay-perspectives. I learned through the course of my research that the lay-perspective is a much larger category under which information from professionals (clinical and genetic) is often incorporated as a part. As well, the families were spread out across the country and it appeared that in most families someone had had direct contact with a specialist with expertise in genetics. In the end, a total of 51 subjects comprised of 33 family members from 15 families (see Table 1) and 18 clinicians and experts (See Table 3) from a variety of specialties were interviewed for this study (See Table 1 and 3 below). Recruitment of participants for the study was challenging because people at risk for HNPCC are not being consistently tracked in British Columbia. As a result, the recruitment of the subjects for this study was not random. All referrals for patient and family participants came from genetic counselors who are directly associated with the HCP. The people who were referred had had some contact with the HCP and were thought to have a mutation for HNPCC. The pedigree shown below of a family with a mutation for HNPCC illustrates that a lot of people can be affected by the risk for a genetic mutation in a family: 4 Initially, I was concerned about the fact that some of the participants would have their "lay-perspectives" contaminated by the information that they received in a genetics counseling session. However, it became apparent that all the families had had extensive exposure to genetic knowledge. In fact, it became difficult to imagine such a tabula rasa family existed with respect to genetic knowledge. Families were spread out over the country and over time. All the families had some sort of access to genetic knowledge, genetic testing (in some other part of the country) or genetic counseling. These families had a tremendous amount of experience with colorectal cancer. Before having HNPCC identified as a possible description of their CRC, they had often been labeled as "family cancer syndromes". Regardless of the diagnostic label, they understood from their experience that their families had a higher risk for colon cancer based on their very real experience over generations. As a result, the notion of the study being based on a "before and after" or "pre and post" exposure to a genetic counseling or testing was abandoned as inappropriate. What became more interesting, was how people understood their family's experience with cancer, its impact on their personal and family identity and what strategies they employed to accommodate their experience. 10 Figure 1: Pedigree a 88 2 Co63 T Pan62 j - Kid68 6 CoS2 " En57 74 25 C D 27-28 29 30 31 • on 32 Co63 BI6ICo4055Co45S0 48Co30Co4I Co58 « 62 60 58Co50 54 52 50 48 67 62 52 46 65 Male Female I, • 50 O 48 MX Co40 < Individual: number.:. Current age sCanccrdeath'fS^g £ Cancer survival Co35 Age at diagnosis Cancer Sites-Iii = bladder Cx = cervix Kid = kidney l.'r = ureter 64 62 60 58 56 En53 53 5ICo48Co3945 43 40 Cx53 49 47 Ur53 BI54 '335t%S8llfW Go = coloii En = endometrium Pan = pancreas (Adapted from Chen et al. 2001: 270) 11 However, this study tended to be restricted to one part of a family as illustrated by the example pedigree below: Figure 2: Pedigree Diag. @ 42 Died (3! 44 Diag. @ 26 Diag. @ 36 / Died @ 34 Age 11 Age 4 OR • OK O = M A L E OR F E M A L E AFFECTED = M A L E OR F E M A L E UNAFFECTED = DECEASED If these people have not had genetic testing, then every one of them needs to have regular clinical surveillance (colonscopy). If they are tested for a mutation for HNPCC and found to be negative, then they (and their children) are spared from having to endure the invasive yearly colonoscopy. Table 1: Participants: People at Risk for HNPCC SUBJECTS N U M B * R At Risk 9 9 Female 0 Male Spouses 7 5 Female 2 Male Affected 16 9 Female 7 Male Sporadic 1 0 Female 1 Male TOTAL FAMILY MEMBERS BY GENDER 23 Female 10 Male T O T A L FAMILIES ii = 15 FAMILY MEMBERS n = 33 12 Family members were interviewed from the Lower Mainland ranging from North Vancouver to White Rock and Aldergrove, Victoria and the surrounding areas, and the interior of BC. Participants were drawn from large urban centres as well as from small towns and rural areas. The geographic range of the interviews gave a sense of some disparities between experiences of families in rural and urban settings especially with regard to access to services. The age range was between 30 and 76 years of age and the group was, on the whole, well-educated (see Table 2). All participants were Euro-Canadian and there were no visible minorities in the interview sample. As a result, this provides the study with some limitations in terms of generalizability. Table 2: Highest Education Level EDUCATION L E V E L NUMBER Grade 11 1 High School Diploma 5 Trade Certificate 2 College Certification (e.g. Medical Office Assistant) 3 Bachelor Degree 4 3 Years of University 1 University Certification (e.g. Chartered Accountant, 3 Engineer) Registered Nurse 3 Medical Doctor 1 Lawyer 1 Ph.D. 3 In addition, I interviewed one individual who was affected with sporadic colorectal cancer. This individual was interviewed about his attempts to initiate a colon cancer support group and gave me a sense of the experiences of people with sporadic colon cancer. I learned of the experiences of people with sporadic colon cancer by participating in and observing the short-lived colon cancer support group. In particular, I listened to three women who had been diagnosed with sporadic colon cancer describing their experiences. These conversations were not structured interviews and were not taped (field notes were kept). 13 Referrals to the study for clinical participants came from the Clinical Director for the HCP. The clinicians who were interviewed were employed within the BCCA as oncology specialists or they worked in regional hospitals where they receive referrals from the Agency. The Clinical Director for the HCP was also interviewed for the study. Table 3: Participants: Clinicians and Specialists CLINICIANS , NUMBER Medical Oncologists 3 2 Female 1 Male Surgical Oncologists 3 0 Female 3 Male Radiation Oncologists 4 1 Female 3 Male Oncology Nurses 1 1 Female 0 Male Genetic Counselors 2 2 Female 0 Male Gastroenterologists 1 0 Female 1 Male Researchers 2 0 Female 2 Male Pathologists 2 1 Female 1 Male TOTAL CLINICIANS BY GENDER 7 Female 12 Male CLINICIANS n = 18 The clinicians were interviewed in order to develop a fuller understanding of the experiences of the patients and families. It turned out that the interaction with the medical and genetic world was not as large an influence on the lifeworld of the families as I had initially imagined. Methods Person-Centred Ethnography Ethnography5 was well suited as a method for studying many of the issues surrounding genetics and genetic susceptibility to illness. For example, an ethnographic 5 Ethnography can be defined as follows: "As a noun, it means a description of culture or a piece of culture. As a verb, it means the collection of data that describe a culture" (Bernard 1995: 16-17). I assume that ethnography is both a "product and a process" (Tedlock 1991: 72). Utlimately, the aim of this research is 14 approach is useful for examining some of the ethical issues associated with genetic services for HNPCC. There is a distinction between lived and theoretical ethics. Theoretical ethics typically relies upon assumptions of individualism whereby patients and professionals are supposed to enter autonomously into contractual relations voluntarily which are independent of their social context. These assumptions tend to underplay the importance of the social context which, in actuality, has a dramatic effect upon decision making. Bio-ethicists, then, typically discuss which ethical decisions individuals ought to make. For example, medical ethicists analyze theoretical ethical situations and have therefore removed themselves from the lived experience of the patient (Burgess 2001; Conrad 1994; McKellin and Burgess 1995). In contrast, my study relies upon ethnographic methods, that is participant observation6 and interviewing, in order to see how people make ethical decisions in the context of the BCCA. Ethnographic methods were used for exploring the HCP and the GI Tumor Group at the BCCA. While this study is concerned with healing narratives, it also focuses on the circumstances of narrative production. For professionals, narratives are inextricably entangled within an institutional topography.7 The recounting of clinical narratives took to produce a narrative ethnography. In contrast to ethnographic memoirs that centre on the writer, narrative ethnographies combine the experiences of the researcher with rich ethnographic detail, reflexive examination of the fieldwork encounter and an analysis of culture. I attempt here to describe both the qualities and the process of the ethnographic discourse or event so that both the "ethnos in ethnography and the graphia—the process of writing" are included as part of the dissertation (Tedlock 1991: 79). 6 More precisely, this investigation will employ observation of participation rather than participant observation, thereby moving away from the exclusive examination of either of the self or the other towards an analysis of both the self and the other as they engage in an "ethnographic dialogue" (Tedlock 1991: 69). As part of this research, I attempt to attain a level of intersubjectivity or bicultural familiarization with the subjects of my study. 71 rely upon Saris's (1995: 42) notion of an institution as the working definition before developing this concept further in the discussion. Institutions assist and constrain the production of narratives: "...bundles of technologies, narrative styles, modes of discourse, and, as importantly, erasures and silences. Culturally and historically situated subjects produce and reproduce these knowledges, practices, and silences as a condition of being within the orbit of the institution. This definition of institution focuses our attention on the ability of the institution to define and 15 place against a complicated landscape at the BCCA. I have tried to be aware of influential ambient factors such as institutionalized arrangements, an awareness of moral tensions, commentaries on suffering and power relations. The data in this study are comprised primarily of narratives collected through in depth one on one interviews. The results of these interviews were transcribed word for word and included, whenever possible, accurate transcriptions of colloquial words, informal utterances such as "uhms" as well as pauses each of which sometimes held important information such as emotional emphasis. My approach employed person-centred ethnography, an approach aimed at digging deeper at the understandings and experiences of social actors. Approaches based on person-centred ethnography attempt to get nearer to experience in order to describe the interplay between the cultural outer world and the subjective inner world. Person-centred ethnographies allow for the exploration of the phenomenologically and culturally constituted world of social actors by utilizing extensive open-ended interviews. In contrast to a traditional ethnography that produces a larger scale illustration of a community, akin to a cultural satellite picture of the area of interest, person-centred ethnography explores the issues that are most meaningful to the participants. Furthermore, I attempted to explore the important emotional and meaningful cultural forces as they directly impact upon people's agency and experience with cancer rather than to assume the presence of cultural forces that are presupposed to be present in some abstract form. The exploration of the personally and culturally constructed world of the patients and family members in this study has been investigated through flexible, constitute as well as on the silences and erasures that provide the persuasive forces for such institutions, [emphasis added]" 16 open-ended and participant-driven interviews in order to see what is consequential for these individuals in their everyday experience. This method allowed me the opportunity to detect the elaborate and changing experiences of these very real human subjects. With respect to illness, this method allowed me to examine the way that the subjective experience of cancer is embodied and concurrently embellished by the culture into the self and, ultimately, into the ongoing construction of people's personhood (Hollan 2000). Storytelling in Open-ended Interviews The majority of studies that analyze the psychosocial aspects of cancer rely upon instruments that yield quantitative data, such as structured interviews, standard scales, and systematic questionnaires, rather than qualitative approaches that might be able to shed light on the issue of validity (Gilbar and Florian 1991; Greendale, et al. 1994; Waxier-Morrison, et al. 1995). These standard instruments are typically aimed at generating quantitative data in order to test hypotheses. In contrast, qualitative studies are especially useful for identifying new areas for investigation and are typically utilized for "discovery, not verification" (Waxier-Morrison, et al. 1995: 180). The study of stories, individual illness episodes, descriptions of the overall illness experience, and the context within which the illness occurs, that is, in the lives of individual sufferers and their family, provide medical anthropologists with a tremendous scope for examining the ways in which narratives give shape to illness experience. The accounts which people give of their experiences in interview settings typically bear similarity to stories in that they exhibit the essential elements of narratives (Mishler 1996).8 By carefully examining people's narratives, I have attempted to uncover the 8 Traditional surveys and interviews tend to restrain story telling and narrative communication (Mischler 1996). As a result, the amount of narrativity which occurs in standard interviews is not actually known 17 "cultural scaffolding" of people's understandings of hereditary colon cancer (Cruikshank 1998: 27). Medical Anthropology This investigation is situated within the field of medical anthropology. Medical anthropology is concerned with the complex interactions between individuals, their bodies and social institutions. In medical anthropology, disease is used to refer to biological pathologies, illness describes the unique ways in which disease is brought into individual consciousness, while the concept of sickness applies to the process by which disease and illness are socially constructed to take on culturally appropriate expressions (Robinson 1990; Young 1982). The narratives collected in this study show that while these are useful analytical categories of disease, the phenomenological characteristics of these three aspects of illness events are not experientially separate. Here, the focus of study is the relationship between culture and illness whereby "disease is not an entity but an explanatory model" (Good 1996: 6). Early architects of the meaning-centred approach asserted that the medical system is a distinct part of the cultural landscape and is therefore constructed, just as are other components of social reality, by a collection of symbolic meanings9 (Kleinman 1973). Within this socio-cultural setting, the medical complex does not simply identify, categorize and react to illness.10 given that many stories are likely not recorded due to the fact that interviewers frequently interrupt speakers in order to re-focus them onto topic. As well, researchers typically determine which storytelling events are relevant and which are not. I plan to carefully consider ways of eliciting narratives as part of my research. 9 A further example of this reasoning can be extended to the notion of efficacy as well whereby: "Efficacy, itself, is a cultural construct. The healing dialectic has been considered effective when the bonds between the sick individual and the group, weakened by disease, are strengthened, social values reaffirmed, and the notion of social order no longer threatened by illness and death; or when the individual experience of illness has been made meaningful, personal suffering shared, and the individual leaves the marginal situation of sickness and has been reincorporated in health or even death into the social body. Healing is 18 Some medical anthropologists have suggested that patients and their family members retain a number of narratives, with rival plots, in order to explain their illness (Good and Good 1994). They may make use of subjunctivizing strategies (strategies that point to a future filled with potential, hope, and multiple possibilities) (Good 1996). In this study, I interviewed clinicians, patients and family members in order to explore the various narrative strategies that they create and to examine the purpose of these techniques. My research design relied upon unstructured interview techniques in an attempt to allow people to take a leadership role in defining the questions and issues, to speak in their voice as much as possible, and to elaborate on their perspectives. Whenever possible, I attempted to let the interviewees maintain control of the direction of the conversation. Sporadic11 Colon Cancer Colon cancer is a common disease. It is the second leading cause of cancer death in Canada12. According to the BCCA (BCCA 1999), six per cent of people will develop colon cancer at one point in their lives. The incidence of colon cancer in men was approximately 54 per 100,000 in British Columbia in 1997 (See Appendix I). The incidence for women was around 34 per 100,000. In Canada, the combined incidence for the end-point of the medical system, the successful re-ordering and organizing of the disease experience and, where possible, its control" (Kleinman 1973: 210). 1 0 The interpretive paradigm, however, does not dispute the importance of biology; instead, it accentuates the interactionist and relativist approach where physiology, social customs and meaning interact in order to organize illness as both a social phenomenon and a lived experience (Good 1996). Rather than simply focusing on illness representations, then, the meaning-centred paradigm centres on the investigation of how various interpretations and understandings of illness interact with social, psychological and biological forces in order to produce unique manifestations of illness. Thus, my research, under this theoretical orientation, is aimed at examining the many ways in which social relations, clinical constructions of medical objects and cultural interpretations interact and ultimately influence individual perceptions of the clinical services and the experience of hereditary colon cancer itself. 1 1 Sporadic refers to the non-genetic form of cancer that occurs in the general population and for which there is no known genetic mutation. 19 men and women was approximately 50 per 100,000 in 1997 (Canada 1997). There were an estimated 1,950 new cases of colon cancer in British Columbia in 1997. Roughly 6,000 people died of colon cancer in Canada 1997. The mortality rates for colorectal cancer are estimated at 23 for men and 14 for women per 100,000 in Canada. In British Columbia, the mortality rates are estimated at 18 for men and 11 for women per 100,000. Clinical Surveillance The most crucial prognostic indicator of colorectal carcinoma is the extent to which the tumor has developed at the time of diagnosis. In general, the cancer is highly treatable by resection, but in 25 to 30 per cent of patients the disease has spread beyond the range of curative surgery at time of discovery (Robbins, et al. 1994). There are several typical types of clinical screening for colon cancer: digital rectal exam, fecal occult blood testing, barium enema, sigmoidoscopy, flexible sigmoidoscopy, colonoscopy and virtual colonoscopy (see Appendix III). The techniques are often combined, such as fecal occult blood testing and sigmoidoscopy. Clinicians vary their use of these tests based on their judgment of the urgency of the case, the effectiveness of the test in detecting the signs of CRC, the invasiveness of the procedure and the availability of equipment (sigmoidoscope or colonoscope). The colonoscopy is the most effective screening and diagnostic test for CRC. In the case of HNPCC, it has been shown in a 15 year trial to cut the risk of CRC by 50 per cent, to prevent deaths due to colorectal cancer and lower overall mortality in families affected by HNPCC by 65 percent (Jarvinen, et al. 2000)13. While it is the most effective 1 2 Please refer to Appendix 1 for a more detailed illustration of the estimated incidence and mortality rates of colon cancer in comparison with other cancers. 1 3 The tests are described in more detail in Appendix 2 and give the reader some sense of the types of clinical surveillance techniques that are experienced by people at risk for HNPCC. 20 surveillance technique, it is very invasive and has to be administered by a highly trained clinician such as a gastroenterologist or a specially trained general practitioner. Individuals who have undergone genetic testing for HNPCC and received a negative test result have their risk reduced to that of the normal population and are spared from having to undergo unsettling procedures and rigorous clinical surveillance. Genetic tests are typically administered as a blood test by a medical geneticist while the clinical surveillance is performed by a medical clinician. Unlike the less effective screening tests such as the fecal occult blood test, the colonoscopy is not covered as a preventative screening test by the provincial health plan. It is only covered when clinically indicated. According to the interviews with people at risk for HNPCC they sometimes encounter problems obtaining a colonoscopy because they do not appear to have any clinical signs of the disease that would warrant it medically. There is a lengthy waiting list for the procedure and many communities do not have a colonoscope. Hereditary Forms of Colorectal Cancer The BCCA sees approximately 2,200 cases of colorectal cancer each year, of which five to ten per cent are due to hereditary cancer predisposition syndromes (Huntsman 1996). While environmental factors are believed to be significant in the etiology of the majority of colorectal cancers (sporadic colorectal cancer), two forms of hereditary colon cancer, HNPCC and familial adenomatous polyposis (FAP) account for between five and ten per cent of these instances (Blackburn and Giardiello 1992; Hardcastle 1993). The social and clinical dynamics of hereditary colon cancer appear different from those of other diseases. In contrast to other late onset genetic conditions for which there 21 is a test available such as Huntington's disease, breast and ovarian cancer, support groups do not exist for hereditary colon cancer in B.C. and the site of the cancer itself may contribute a dimension of stigma that restricts the development of support groups. Furthermore, unlike other genetically determined cancers for which there are only limited therapies available with unproven effectiveness, genetic testing for proneness to hereditary colon cancer can lead to early detection and effective treatment with surgical intervention (DeCosse 1995). By raising awareness of risk and increasing the vigilance of clinical surveillance, genetic testing for HNPCC could help to prevent people from dying of colorectal cancer. It could also spare some individuals from families with family cancer syndromes the discomfort of invasive surveillance techniques such as the colonscopy. Colon cancer is usually a disease of the elderly. Forty-five per cent of all new cases of cancer and fifty-six per cent of deaths attributed to colon cancer in Canada occur in individuals who are seventy years of age or older (Canada, 1997). However, familial colon cancer is different. In contrast to sporadic colorectal cancer, which occurs around age 70, HNPCC manifests itself at an earlier stage in a person's life, typically around 40 to 50 years of age. Individuals with HNPCC are also at a higher risk for ten other cancers: endometrial, ovarian, bladder, breast, kidney, larynx, pancreas, stomach, small bowel, and ureter (Blackburn and Giardiello 1992; Li 1995). As a result, HNPCC is most accurately referred to as a syndrome given that it does not only refer to genetic susceptibility to colorectal cancer but also a number of other cancers14. 1 4 Following this logic, although I recognize that HNPCC is more accurately described a syndrome, I use HNPCC rather than hereditary nonpolyposis colorectal cancer syndrome throughout the dissertation for brevity. 22 In the case of HNPCC, inherited mutations in one of five DNA mismatch repair (MMR) genes (MSH-2, MSH-6, MLH-1, PMS-1, and PMS-2) have been identified that bring about this cancer (Syngal, et al. 2000). Mutations in MSH-2 and MLH-1 account for over 95% of HNPCC families (Burt 2000). The penetrance15 for HNPCC is high; people with these genetic alterations have approximately a 70 per cent chance of developing this colorectal cancer. Some clinicians suggest that the treatment of choice for the prevention and treatment of inherited colorectal cancer should involve a total colectomy (DeCosse 1995; Schofield and Martin 1993). With the advent of genetic testing, one of the difficult issues that emerges for people at risk is to consider the possibility of prophylactic colectomy. HNPCC is unusual among genetic illnesses in that careful surveillance and early detection can, unlike other diseases such as Huntington's or hereditary breast cancer, lead to effective medical interventions that are highly effective for people at risk for colon cancer (Jarvinen, et al. 2000). To put it simply, if a genetic mutation and the related cancer are detected early, individuals with mutations for HNPCC are unlikely to die from colon cancer. Despite this optimistic prognosis, colon cancer still remains the second leading cause of cancer death in Canada. Yet, if it is not detected early, people almost certainly die from this disease. Qualitative Research on Advances in Genetics The research was driven by findings from previous research on analogous genetic conditions that suggested that there may be a fundamental incongruity between the perspectives of genetic service providers and the people who utilize these programs 1 5 Penetrance refers to the likelihood that individuals who have inherited the faulty gene will develop the condition. 23 (Richards 1997). The more precise nature of lay-perspectives on inheritance and on the social dynamics that affect them have not been adequately studied (Richards 1993). Those studies that do exist tend to compare and contrast lay perspectives with medical points of view (Davidson, et al. 1989; Davidson 1996; Richards 1997) or attempt to classify them (Henderson and Maguire 2000). While this study provides direct data on lay-perspectives it also raises some questions about the accuracy of the conception of lay versus expert perspectives. There are several features of genetic testing which make it culturally unique (Davidson 1996; McKellin and Burgess 1995). Firstly, genetic information about future illness can be provided at an extremely early point in a human's life.16 Secondly, genetic aspects of personhood can be transferred inter-generationally. Thirdly, DNA information offers a biographical blueprint of personhood. Finally, there is a shared heritage to genetic material that may have a dramatic effect on kinship and family identity. Advances in genetics have transformed screening technology from an earlier point when it was used for the early detection of disease to the point of identifying a "latent or pre-clinical phase" (susceptibility in people who have not manifested the disease) (Goel 2001: 1176). In the case of HNPCC, this means that a genetic test tells someone well in advance that they have an extremely high likelihood of developing cancer. Genetic tests offers the potential benefit of identifying high-risk groups by providing them with increased clinical surveillance that can reduce morbidity and mortality (Evans 2001). For example, predictive testing demonstrates certain clinical 1 6 The possibility for social exclusion (i.e. vocationally or with respect to health insurance due to illneses that are not yet manifested) looms in the background with DNA based information (Davidson 1996). In the future, Galton's eugenics and the related drive for human classification may be re-awakened under the 24 utility in the case of HNPCC where regular surveillance with colonoscopy of people at risk reduced their development of cancer by 62 per cent (Evans 2001; Jarvinen, et al. 2000). However, in many instances, such as the case of breast or ovarian cancer, the provision of genetic information about an inherited predisposition does not lead to a clear-cut reduction of risk (Evans 2001). Yet, during the course of this study genetic testing was available for breast cancer but not for colon cancer in British Columbia thereby providing support for the suggestion that genetic testing services are sometimes implemented without substantiated clinical benefit (Burgess 2001). The identification of genetic mutations that confer a high risk for breast, ovarian and colorectal cancer have sparked debate in the medical field about the core of clinical practice with respect to whose responsibility it is to provide services for people at risk for these diseases (Donnai and Elles 2001; Greendale and Pyeritz 2001). This debate is further fueled by the suggestion confirmed in the findings of this study that there do not appear to be enough programs or experts in medical genetics to provide services to those at risk for these diseases. There does not appear to be a large enough "genetic workforce" to cope with the needs of diseases presently massed together under the umbrella of medical genetics as the demands on the primary care physicians and the health care system increase (Greendale and Pyeritz 2001: 224). While it appears that primary care providers are the most logical candidate (family physicians, pediatricians, obstetricians or general internists) to expand their role to include medical genetics serious questions remain about the adequacy of their knowledge base and clinical practice with respect to genetics (Emery, et al. 1999; Pinsky, et al. 2001). In fact, in a recent study it guise of a bio-technical mandate to improve the human gene pool (and possibly discriminate against people with particular genetic backgrounds) (Rabinow 1993). 25 was found that a family history of cancer, the primary tool for the assessment of genetic illness, was only taken in 51 per cent of interviews with new patients and only 22 per cent of interviews with longer term patients (Acheson, et al. 2000). Social scientific research on genetic testing suggests that social variables outside the clinic, such as family dynamics and commitments, profoundly affect whether people seek out genetic services and, if so, how they will ultimately utilize the information provided (Burgess and d'Agincourt-Canning 2001; McKellin 1997). These findings havered ethicists to reconsider the basic tenets of ethics by examining the impact of "relational responsibility" or "commitments to others" in clinical practice and ethical analysis (Burgess and d'Agincourt-Canning 2001: 24). Provision of information through genetic services does not appear to change people's pre-existing ideas about inheritance. People are more likely to recall information that is consistent with their pre-conceived notions (Shiloh and Berkenstadt 1992). The precise way in which information is communicated to individuals by professionals is important. People tend to have difficulty in understanding information that is presented statistically17. Verbal descriptions tend to have a more powerful impact on people (e.g. 'the risk is dramatic' or 'the results are striking')18 (Shiloh and Sagi 1989). Pre-existing ideas about inherited illness are a key area for this study. Changes in a person's risk status for an inherited disorder, brought about by testing, may have profound implications for the identity of an individual or that 1 7 It is rare to find people who describe inheritance in scientific terms. This includes people who have undergone genetic testing and counseling. It appears that many individuals who seek genetic counseling do not have any previous knowledge of chromosomes or genes and attempts by counselors to educate them with respect to these terms seems to confuse clients (Richards et al. 1995). Lay accounts do not typically specify how inherited features are passed on (division of genetic material in the formation of eggs and sperm, their union in the zygote with the fusion of two sets of chromosomes). 26 individual's family (Chapman 1992; Richards 1993; Wilke 1995). However, several issues remain under-examined. How are children prepared for the possibility of genetic susceptibility to illness? What rival models do people have for understanding illness and guiding their behavior with regard to genetic information and treatment? How are various family dynamics affected by genetic susceptibility to illness and genetic information? How are people pressured or prevented from seeking genetic information by family members? Genetic testing and counseling services may necessitate the reconnecting of family members who have not been in contact with one another for a long time. What is the purpose of genetic and clinical information for families and how do they use it? The qualitative methods employed in this study have been useful for exploring these issues and offer some insight into how family members communicate about inherited illness. Research on analogous diseases such as Huntington's disease (HD)19 and hereditary breast cancer is useful for demonstrating the differences between the predictions of service providers regarding the utilization of genetic testing and counseling services and the actual practices of service users. Before testing was available for HD, surveys were administered in Britain to people who had a 50% chance of developing the disease. On the basis of these surveys, it was inferred that approximately 75% of these people would come forward for testing once it became available. In 1993 the gene itself was identified. As a result, direct testing was available for individuals without requiring 1 8 Counsellors may describe risk in terms of a single figure, a sequential comparison to other genetic risks in the general population or in verbal terms such as: doubtful, high or low. 1 9 Huntington's Disease (HD) is an exclusively genetic disorder. It is a degenerative disease which begins in middle age and has no cure. It is fatal. It is a dominant disorder (one faulty gene and one normal one will result in the disease) that is 100% penetrant. It is exclusively genetic in that the disorder never develops in someone who does not have the faulty gene. Approximately 1 in 5000 people develop this disorder. 27 blood from other family members (linkage analysis). This meant that near certain results were available in contrast to linkage testing which gave probability results. In actuality, only 5% of people came forward for genetic testing. As well, the motivations for seeking testing were different from those anticipated by service providers. For example, in contrast to service provider notions of the usefulness of genetic services for reproductive choices, most of the people who come forward do not have concerns about their children at the forefront of their mind. In fact, the issue of risk for their kids is often first raised by the genetic counselor (Richards 1996).20 Counselors and clients appear to have different ideas about the purpose of genetics counseling and testing. For instance, while counselors are mostly concerned with conveying risk assessment and offering scientific information, clients are typically more interested in finding out about disease prognosis, treatment options and strategies for reducing their risk. Clients experience difficulty in understanding scientific genetics and they have elaborate ideas about inheritance that differ from Mendelian genetics. Furthermore, family relations appear to have a significant impact on the information that is provided in the genetics clinic. There have been some surprising findings with respect to the predicted benefits of genetic testing services, especially for people who have learned that they have a low risk for a disorder. In contrast to the predictions of service providers, some of the individuals who were told that they were not likely to carry a faulty gene still reported high levels of 2 0 Genetics counseling has not been proven to be effective in shaping behavior. For instance, the effects of genetics counseling on reproductive decisions are unreliable. Rather, it appears that information about genetic risk interacts with people's notions about the burden of genetic disorders (such as the consequences of having children who have a serious illness). These already existent ideas may actually influence people's decision making more than the information that they receive through genetic services Hallowell and Richards (1997). 28 psychological distress (Huggins, et al. 1992). In fact, some reported that they encountered feelings of grief and depression after their initial experience of relief upon finding that they were unlikely to carry the defective gene. On the other hand, those who found that they were likely to carry the faulty gene appeared to experience psychological and emotional pain initially, but recover rapidly (Tibben, et al. 1992). This study suggests that family members at risk for HNPCC have already developed effective strategies for coping with risk for inherited susceptibility to illness long before they obtain genetic testing. The experience of genetic services fits into a lifetime of experienced lived risk. Most studies of genetic services have tended to focus on areas of concern for professionals. Chappie et al. (1995a) provide one of the few studies about lay understandings of genetic disease. Although they did not originally set out to explore lay conceptions of genetics, these perspectives emerged during the initial interviews with their subjects. They found that many of the people who were initially referred for genetic counseling had never heard of genetic counseling and were therefore unsure about what to expect from these services. Furthermore, they discovered that genetic disease was perceived as exceptionally stigmatizing and that many people experience a great deal of guilt and shame about genetic conditions. 2 1 For example, reviews of the curriculum in graduate programs for genetic counselors in North America are available (Smith 1993). The historical and practical factors that influence the use of non-directiveness in genetic counseling have also been examined (Wolff and Jung 1995). As well, numerous scholars have discussed the ethics of genetic testing (Shapiro 1994), and the need for the development of professional protocols (Greendale et al. 1994; Lernman and Croyle 1995; Reilly 1995) in addition to cost-benefit utilitarian analyses in relation to the advantages of such technologies for society (Rothstein 1995; Shickle and Chadwick 1994). Studies that offer a discussion of the hazards of genetic counseling, such as the potential for suicide as a result of testing, usually represent these issues from the point of view of the service provider (Peters 1994). Moreover, some scholars, who purport to describe the initial experiences of genetic counseling, strangely neglect to represent client experiences of these programs (Oosterwijk 1996). 29 In fact, both health professionals and the general public make judgments about blame and control on the basis of the screening history of a person who carries a genetic disorder (Marteau and Drake 1995). However, further research is required in order to determine the prevalence of iatrogenic guilt that may at times be brought about in the genetic counseling setting (Chappie, et al. 1995b). Some authors suggest that contemporary social emphasis on life style as a causal agent may hinder the acceptance of genetic explanations for disease (Chappie, et al. 1995a). This study offers a different explanation that hinges on the protection of personhood. Research on Colon Cancer Very little qualitative research has been completed on HNPCC to date . Unlike sporadic colon cancer, even the precise incidence of HNPCC is not known. Most previous work has been undertaken from the perspective of service providers, clinicians and geneticists. However, studies that document what physicians23, patients and family members actually know about this illness are simply not available. The area is so new that ethnographic techniques are essential for identifying potential research questions. Some scholars have suggested that information regarding how families cope with uncertainty in the absence of genetic testing should be investigated before introducing wide-scale genetic testing services (Strong and Marteau 1995). My work addresses this concern by examining HNPCC in the pre-genetic test era. My investigation also attempts to provide a systematic inquiry into patient experiences and understandings of There is a notable exception of a related psychosocial study of a disorder that takes place at the same site as colorectal cancer: inflammatory bowel disease (Fouldes, 1984). This study makes use of open ended interview techniques with people living inflammatory bowel disease in order to examine how people construct meaning from their illness experience. 2 3 It is not clear how much clinicians, who receive very little training about genetics and genetic illness, actually know about HNPCC. 30 inherited colon cancer and genetic information. A number of questions were used as organizing themes in my research (see Appendix II). However, these were used only as rough guidelines for research areas of interest. Very few researchers have examined attitudes about genetic testing for colon cancer. One exception was a study that surveyed American adults and revealed that most respondents reported that they would be interested in being tested, that people with higher incomes reported a higher interest in being tested, and that 94 per cent of people would share positive results with others . Respondents identified three major concerns that they might have if they were told that they were susceptible to colon cancer. These concerns related to the reduction of risk for colon cancer, the possibility of increased anxiety and the worry about colon cancer risk for relatives. Because the authors used a structured interview technique designed for gathering quantitative data, they missed collecting information in several meaningful areas. For example, the investigators did not ask the subjects whether they would discuss their results with anyone if the results were negative. This research was also limited due to the fact that the individuals who were interviewed had not actually experienced either colon cancer or genetic testing.24 Preliminary research into the experiences of individuals who pursued genetic testing for familial adenomatous polyposis (FAP), reveals that people may have pre-existing notions regarding having colorectal cancer. It appears that family identity is strongly affected by the illness and the presence of a gene mutation in the family Most research in genetics has tended to examine what people say they will do rather than actual behaviour due to the fact that longitudinal research is too expensive (Hallowell and Richards 1997). In contrast, I will track actual behaviour in my study by completing pre and post test interviewing. 31 (Petersen and Boyd 1995) . However, lay beliefs about inheritance have not been systematically studied, such as the notion of running in the family or ideas about proximity26 (Chappie, et al. 1995a; Richards 1993). The narratives in this study provide some of the missing data on lay-perspectives about hereditary cancer as well as information about people's understandings of HNPCC before the advent of genetics testing which have not been studied in the past. One of the few studies of communication between physicians and patients regarding colorectal cancer reveals that there are significant misunderstandings between doctors and patients with respect to treatment and prognosis (Haidet, et al. 1998). Patients tend to estimate their prognosis more favorably than their doctors. These very basic misunderstandings are not enhanced by further direct communication between medical practitioners and patients. These findings suggest that there may be basic incongruities between patient and clinician ideas about illness. Social and Clinical Dynamics of Colon Cancer Over the course of several years that I worked on this project many people who were not directly involved as official research subjects asked me questions about the study. Most of the people that I talked to about my research clearly believe that colon cancer is primarily a disease that strikes only men. Most also seemed to believe that it is a relatively uncommon disease that primarily strikes the elderly. As well, nearly all seemed to find my choice of topics odd and somehow humorous and I came to understand their amusement as an innuendo of shame about the site of the disease. The 2 5 Although these researchers relied upon open-ended questioning, in conjunction with a predetermined set of research concerns, their research did not appear to draw heavily, at least in its final form, upon the rich qualitative data that must have been collected. 32 mere mention of the word colon sometimes precipitated utter stillness in the conversation, nervous laughter or outright inquisitiveness about why I had chosen such an implicitly scornful topic. This study shows that HNPCC is unique for several reasons. Firstly, it is different from many other cancers in that there are effective treatments for it. It can be prevented; yet it remains as the second leading cause of cancer death in Canada. Secondly, it is unique socially. Unlike other common cancers in BC, there is no support group for colon cancer. The narratives of people at risk for HNPCC show that there are three negative social components associated with the cancer: the shame associated with the site of the colon cancer, guilt and shame associated the genetic side of the cancer and fear connected with cancer in general. The narratives of people at risk for HNPCC in this study confirm the suggestion that genetic disease can be seen as both "amoral and moral"(F inkier 2001: 248). This study will show that genetics is sometimes used by people at risk for hereditary illness as a way to deflect blame for their illness. Conclusions Advances in genetic testing technology hold the potential to shift the focus of medicine from the patient to the family and to encourage a stronger emphasis on the management of risk and the prevention of disease. Notwithstanding, this research suggests the potential brought about by advances in clinical genetics with respect to HNPCC have not been realized in medicine. The results of interviews with medical practitioners and observations in clinical settings also suggests that the potential of genetics has not really penetrated the practice of oncology as it pertains in any real way to 2 6 Proximity refers to the lay belief that an individual can only inherit an illness that has been manifested in a close relative of the same gender (Richards 1993). 33 the treatment of patients with HNPCC. It appears that oncologists still address disease, rather than the risk of disease and that their object is still the patient rather than family. This thesis examines some of the institutional arrangements and wider contextual variables that appear to shape clinical roles and configure medical practice. The narratives of people who actively manage their risk for HNPCC highlight some of the factors that influence individual and cultural constructions of personhood . This study attempts to explore the impact of hereditary illness on personal and family identity and to provide a glimpse of some of the strategies that are employed by people and families as they try to contend with their experiences. The theoretical underpinnings of this dissertation will be discussed in more detail in Chapter Two: Theoretical Underpinnings: Towards an Anthropology of Personhood. The third chapter of this dissertation examines some of the wider health care context and institutional arrangements as they pertain to the treatment and clinical construction of HNPCC. This chapter is only able to offer a brief overview of a number of overarching societal arrangements of health care that impact on families with colon cancer and the oncologists who treat them. Their impact will be seen in more detail in the family and clinical narratives presented in Chapters Four, Five and Six. Chapter Four: Introduction to Patient and Family Narratives begins with the assumption that given that there are distant, inconsistent and sometimes nonexistent genetic services for these families, they have had to develop their own understandings of hereditary colon cancer. Their understandings are their own, they are immensely complex, and they are based on personal experience, medical knowledge, genetic knowledge, lay theories, the media, the internet, library research and soul searching. 34 These personal interpretations are part of a process of intentional self-authoring by people whose very person is under siege as they confront the borderland between the psyche, culture and their own illness. These narratives form the heart of this dissertation and are also discussed in Chapter Five: The Construction Of Personhood. In Chapter Six, the clinical narratives provide a look at the understandings of medical practitioners, mostly oncologists, with respect to HNPCC. In particular, this chapter reveals that genetics is not very influential in the clinical practice of medicine with respect to HNPCC. It will also demonstrate that medical practitioners concerned with colon cancer, as a rule, do not diagnose HNPCC or recognize the hereditary nature of the disease or the need to follow it in families. I argue that this is related to the unavailability of genetic testing and institutional arrangements of clinical roles (e.g. organization of their oncology roles and disciplinary hierarchies) and the organization of health care (what oncologists are paid for and what they are not). In the final section of this dissertation, Chapter Seven: Conclusions, I argue that people at risk for HNPCC knowingly create their essential being in the midst of culturally constituting forces (such as the experience of being genetically at risk for illness or the experience of being a cancer patient). People who have been at risk for hereditary illness for their entire lives recognize threats to their status as persons that include guilt, shame, diminished sexuality, job loss, death, portrayal as a cancer patient and the stigma associated with the site of colon cancer. The interviews with family members suggest that the fateful moments brought by illness or the genetic risk for it lead to a heightened awareness of or focus upon the construction of personhood rather than a passive acceptance of culturally constituted identities. People do not want to be defined by their 35 cancer or the risk for it and they reflexively use healing emplotment to narrate their autobiography in ways that are sustainable. I also suggest that medicine and genetics are distinct cultural spaces with respect to HNPCC. In the clinical world, lay-perspectives are sometimes problematized and seen as a barrier or obstacle to the provision of medical information. Lay-perspectives are the messy things that prevent the transmission of medical and genetic knowledge into the preferably empty and therefore receptive vessel of the patient's mind. This study examines the issues in a different way by focusing on the complexity of lay-perspectives that are receptive to genetic and medical understandings, flexible but not subservient. The next chapter outlines the theoretical framework for the study. 36 CHAPTER TWO: TOWARDS AN ANTHROPOLOGY OF THE PERSON The theoretical approach introduced in this chapter attempts to go beyond the focus of illness narratives and therapeutic emplotment on sense making to a healing emplotment approach that emphasizes the process of person making. Each person has many narrative selves that cumulatively highlight their life narrative (Ochs and Capps 1996). A life narrative connects a constructed past with an imagined and hoped for future (Brock 1995). The importance of life narrative is central to the process of healing emplotment. People use healing emplotment to organize the many segments of their cumulative experience with genetic susceptibility to illness. The interviews with people genetically at risk for HNPCC will show that the variables that they draw on to make themselves may include but are not limited to their experiences with illness and therapies. At the heart of healing emplotment is the need to fortify a protective cocoon around a coherent life story about personhood. Personhood is a crucial part of healing emplotment and it involves the construction of a consistent identity: "Personal identities are narratively constituted. They consist of tissues of stories and fragments of stories, generated from both first- and third-person perspectives, that cluster around what we take to be our own or others' most important acts, experiences, characteristics, roles, relationships, and commitments"(Nelson 2002: 30). While illness can disrupt peoples' hoped for futures, healing emplotment can fortify the imaginescapes27 of their personhood. The people who were at risk for HNPCC in this study were aware of some fundamental existential questions associated with their risk status and the potential for this disease. This chapter presents a conceptual framework that attempts to explore these larger questions raised by the narratives of people at risk for HNPCC. The framework 37 combines anthropological issues about narratives in medical anthropology with key theoretical discussions on the relationship between the self and society28. This chapter begins with a brief discussion of what it is to be a person (Cassel 1982; Geertz 1975; Morris 1994; Shweder and Bourne 1984) and challenges to a person (Goffman 1986 (1963); James 1995). This includes a discussion of several variables that can threaten personhood such as stigma, guilt, shame and fateful moments (Giddens 1997) and examines their applicability to the risks to personhood of people with HNPCC. This is followed by a description of how people manage the ever present risk in their lives by attempting to colonize their future, to search for life politics and to develop pure relationships (Giddens 1997). Therapeutic Emplotment and Healing Emplotment These risk management strategies are part of a process of healing emplotment. My concept of healing emplotment is a process that foregrounds the perspective of the person actually managing the risks of HNPCC in the context of their entire life: past, present and future. Healing emplotment grows out of work on therapeutic emplotment in medical anthropology that focuses on the process by which practitioners and patients actively make use of a narrative or story framework, with a plot-like structure, that This term is not my own. I have adapted it from Nuttall (1992). 2 81 do not intend to use the notions of society and culture synonymously but instead to look at them as two important and related topics of study for anthropology. On this issue, I have adopted the interactionist position of Hannerz (1992). A full discussion of this position does not fall within the bounds of this study and has been covered extensively in the original work of (Hannerz 1992). 2 9 While I will use the terms story and narrative interchangeably, it should be noted that literary theorists make a sharp distinction between the two concepts (Mattingly 1994). The term story refers to a series of events or experiences, whereas the notion of narrative refers to a specific discussion that describes events or experiences. According to this reasoning, actual experience lacks the guiding shape provided by a plot, whereas plot always provides the structure for literary narrative. This investigation will focus on the process of narrativity. Here, narrative is conceptualized as a social action, rather than as a simple manifestation of experience which can be captured in text. In keeping with the assertions of contemporary investigators of narrative, I do not claim that narrative is a direct reflection of experience. This is clearly 38 helps them to guide and interpret therapies, treatments and clinical approaches to serious illness such as: planning treatment schedules, determining which therapies are undertaken initially, and ascertaining which side-effects may be manifested (Mattingly 1989; 1994). While therapeutic emplotment has focused on therapeutic and illness-centred narratives, I employ the concept healing emplotment in order to shift the focus to the non-clinical aspects of illness such as the management of risk, the construction of meaning and the way that people knowingly work to construct themselves as persons. The approach espoused in this study is a patient centred approach that looks at the larger life strategies employed by people to successfully live with the risk of HNPCC and in so doing to grapple with the essentiality of what it is to be a person. In the latter section of this chapter, I introduce another concept, emotional capital which emanates from the social support networks that individuals are able to mobilize during the course of their healing. It is a form of symbolic capital that builds upon various forms of social capital (Bourdieu 1990; 1995; 1999). Emotional capital is gained from more personal connections with others: lovers, family, friends and it holds absolute value relative to all other forms of capital during fateful moments. Emotional capital provides the underpinning for individuals' interpretations of experience and the clinical narratives and the relations they develop with medical practitioners with respect to HNPCC. In many instances, this desire to contribute to the wider human community through research and to share what they had learned appeared to be the explanation behind many of the subjects' participation in my research. The supreme value of emotional capital made it clear that not only institutions and individuals define persons distinct from the simple analysis of stories. As well, an illness narrative is but a smaller part of the overall life story of an individual. 39 but that significant others also make us who we are. People knowingly shared the narrative of their self with important others in their social world. The narratives provide instances where personhood appears to be collectively narrated by couples, if only for a fateful moment. Narratives in Medical Anthropology This thesis takes a phenomenological approach to individual's experience and its representation in illness narratives about personal experience of illness. It is unusual for individuals, who are essentially social beings, to experience their self-definition abruptly somatocized by serious illness (Good, 1996). Individuals' experiences are socially legitimated and mediated by clinicians. Illness narratives help individuals to re-constitute themselves in the face of illnesses such as cancer. The clinical realm reveals a battlefield where all the stakeholders—clinicians, patients and family members—struggle to achieve understanding of the illness, to find meaning in the situation, and to choose a therapeutic direction. Clinical or therapeutic narratives tend to unfold the medical plan for the patient and refer to the meaning for the disease experience constructed from the point of view of the clinician or therapist. The perception of medicine as a narrative activity itself has permitted me to move beyond the issue of disease diagnosis in order to include an analysis of the complex personal and social experiences of patients, their families and clinicians as they encounter hereditary colon cancer (Hunter 1991). In this study I will show that people make use of a similar narrative strategy, healing emplotment, to organize their experiences with cancer in order to take more control over the protection and direct authorship of their personhood. Healing emplotment foregrounds the perspectives of people directly affected by illness rather than 40 the joint construction, led by the clinician, of therapeutic emplotment. Healing narratives go beyond the confines of the clinic and the clinical relationships but include family members and others who provide emotional capital and social support as well as those who are also at risk. They are a larger enterprise and can incorporate both therapeutic and illness narratives. In this case, they refer to a larger process of managing the personal, experienced risk of HNPCC. Situating ourselves within an understandable narrative told as a story is essential to the process by which individuals make their lives meaningful (Mattingly 1994). Humans create sense and meaningfulness from their experiences by generating a plot while actually experiencing their lives. Social actors have a narrative stake invested in making stories as they live through life events. The narratives collected in this study show that family members affected by HNPCC create a narrative response to their family's illness experiences early in life. They actively emplot a healing strategy that shapes their ongoing experience into a congruous form where narrative order gives birth to a recognizable beginning, middle and end. The narrative production of a whole from a number of occurrences permits the discovery of or creation of a meaning, a moral, and a purpose of a story (Mattingly 1994). The interviews in this study show how people narratively construct their many experiences and understandings in order to sustain their personhood as part of healing emplotment. Narrative strategies are employed by both clinicians and patients in order to structure time so that it is either abbreviated or lacking in distinct limits in order to focus attention on the moment, thereby attempting to facilitate hope for the future. Medical professionals who cautiously attempt to direct the pace at which information is shared 41 carefully regulate discussions with respect to treatment and prognosis. For example, the interviews with oncologists reveal that most do not, as a rule, discuss death with patients even though the oncologists recognize that this is a very important issue for their patients. The development of an optimistic therapeutic story is a crucial element for the medical practitioner in the treatment of cancer (DelVecchio-Good, et al. 1994). The potential for a tragic ending to an illness story is especially unsettling in the treatment of cancer and, as a result, oncologists may address the issue of endings by actively working to guide the perception of time by their patients (DelVecchio-Good 1991). The narratives of people genetically at risk for HNPCC suggest that the development of a healing story is more important for people who have been at risk for hereditary cancer for a lifetime and that their illness and treatment story is only a small part of this overall narrative. The examination of the healing narratives of people affected by HNPCC has provided an "especially fine mesh for catching such ideas" (Good 1996: 165). Healing narratives emerge from the interaction of individual life experiences and agency with the preexisting social institutions and cultural models. I employ both a psychogenic and sociogenic notion of human agency in order to build a bridge between the two ends of this theoretical continuum (Ortner 1997; Veroff and Goldberger 1995). While agency is culturally constructed in specific times and places, it is arguably also a strategy employed by people to engage the contextual forces that constrain them. This study attempts to show that the construction of agency is part of the way that family members affected by cancer actively manage their personhood as an essential part of healing. 42 The interviews in this research have emphasized the importance of examining subjects as "contextualized persons" (Geertz 1975: 36). Patients receiving treatment are also part of a social context where they are mothers, fathers, sisters, grandmothers, daughters, spouses, nurses and professors. Neither the genetic nor the clinical world appeared to have much bearing on the construction of their person or their illness experience. HNPCC has a different meaning to families than it does to clinicians, epidemiologists or geneticists. It has a much more real presence in their lives. All the people interviewed in this study had been dramatically impacted in some way by the presence of many instances of cancer, likely to be HNPCC, in their family. The participants in the study had either experienced colon cancer personally, were themselves at high risk for colon cancer or were the spouse of someone in one of these two categories. In order to be classified as a family likely to have HNPCC, families had to have multiple occurrences with cancer over the period of several generations. The narratives in chapters four and five about peoples' experience with HNPCC are a complex intertwining between their health experiences, their social world and their cosmology. Individuals who enjoy full personhood may have this status jeopardized by an illness experience or, as sometimes the case with HNPCC, the risk of illness. Their narratives reflect a concern about the status of their personhood. For example, when a parent realizes that they may die before their children grow to adulthood or even adolescence, this fateful awareness has a dramatic impact on the construction of their personhood. In some cases, people dramatically altered their way of understanding themselves as persons (e.g. regarding their work career, their marriage relationship, their children, the meaning or direction of their life). 43 In practical terms, these families have a tremendous amount of experience with cancer. They live their lives with an elevated sense of risk. They have all lost family members, often including parents or siblings, at an early age. Hereditary cancer has become a large part of their family's experience. They were not strangers to cancer or the cultural ideas normally associated with cancer such as death, uncertainty and loss of life potential. They were very aware of the stigmatizing aspects of this particular cancer, in particular due to its site and potential for highly stigmatizing surgical interventions. The question with which many of these people struggle is the extent to which they allow cancer to define who they are in their social and personal world, that is, the role it takes in personhood. Research on people's decisions about their genetic risk and health are often affected more by considerations about social relationships than they are by the medical information that is provided by medical or genetic practitioners in clinical settings (Burgess and d'Agincourt-Canning 2001; McKellin 1997; McKellin and Burgess 1995). While the field of bio-ethics uses a framework for understanding based on autonomous decision-making, this framework has been challenged by anthropological orientations that identify social relationships as one of the most influential variables in decision-making about health (Burgess and d'Agincourt-Canning 2001; Frank, et al. 1998). The disclosure of illness status by medical practitioners and the way that this information is handled by patients is affected by relationships which range beyond those established between clinician and client inside the medical environment. In fact, some patients choose to avoid information about a possible health condition and, instead, elect to have their families manage the rate and flow of disclosure information about their disorder 44 (DelVecchio-Good, et al. 1993; Gordon and Paci 1997). Anthropologists have further challenged bio-ethical conceptions of autonomous patient decision-making by demonstrating that in most situations, it is the family rather than the individual that makes serious decisions about health such as whether or not to employ life-support technology (Frank, etal. 1998). It appears that one of the most important factors for patients when making decisions about their health relates to their sense of personal obligation to maintain family relationships and responsibilities. Decisions about health care are not really made in clinics; they are made within a network of family relations. In foregrounding the healing narratives of families directly affected by HNPCC, this study examines the purpose of genetic and medical information in people's ongoing autobiography of their person and life plan. The theoretical framework for this dissertation draws upon the work of Pierre Bourdieu and Anthony Giddens each with a different treatment of the relationship between self and society. The qualitative data gathered in this study supports a move towards a theoretical vision "of structurally embedded agency and intention-filled structures, to recognize the ways in which the subject is part of larger social and cultural webs, and in which social and cultural 'systems' are predicated upon human desires and projects" (Ortner 1996:12). The interviews provide evidence for the argument that people at risk for and affected by HNPCC are knowingly at the centre of a number of culturally constructed and constructing spheres that influence personhood. These spheres of mutual influence include the culture of genetics, the culture of medicine, institutional arrangements and narratives about cancer in the wider society. Before turning to the 45 work of Bourdieu and Giddens it may be useful to review some of the important ideas about what it is to be a person. Personhood In the context of this study, personhood is understood as a process where the subjective and social worlds engage one another. The field of cultural psychology has made some important contributions to theoretical ideas about personhood. The subject matter of this field is useful for developing a fuller definition of personhood: "the study of the way cultural traditions and social practices regulate, express, and transform the human psyche, resulting less in psychic unity for humankind than in ethnic divergences in mind, self, and emotion. Cultural psychology is the study of the ways subject and object, self and other, psyche and culture, person and context, figure and ground, practitioner and practice, live together, require each other, and dynamically, dialectically, and jointly make each other up" (Shweder 1995:41). Building on this definition, then, I define the person as a process by which the interconnections between human beings as perceiving selves and culture relate mutually with one another. The assumption being made here is that culture does not have autonomy from the process of meaning-production by humans and likewise the sentience and perception of humans is affected by their engagement with a meaning-laden social world. The identity of persons and their culture are interconnected and are indivisible with respect to the production of understanding and meaning. A convincing examination of the relationship of the individual to cultural context needs to address the perception of individuals who they exhibit agency in their social and clinical lives, that is, it should contain an underlying current of intentionality in both the person and the social world (Ortner 1997; Shweder and Bourne 1984). In this study, I analyze the way that people narratively construct agency and simultaneously give 46 meaning to their personhood and social world. This dialectical territory of cultural and personal agency is an ongoing process: "by which culturally constituted realities (intentional worlds) and reality-constituting psyches (intentional persons) continually and continuously make each other up, perturbing and disturbing one another, interpenetrating each other's identity, reciprocally conditioning each other's existence" (Shweder and Bourne 1984: 71) Culture in this sense is particular rather than universal and is, along with human identity, ever changing rather than fixed. The two phenomena mutually make up one another. The narratives of patients, people at risk for HNPCC, their family members and attending medical practitioners gave a window on cultural "zones of friction" where different meanings, identities and levels of power encountered one another (Ortner 1997: 8). Personhood provides information about the status of an individual's membership in society while stigmatizing illnesses challenge personhood. Full membership carries with it dignity, power and privilege. Attributes that are intensely socially compromising can degrade an individual from a full person to a tarnished, diminished one (Goffman 1986 (1963)). People with this diminished value are considered to be "not quite human" (Goffman 1986 (1963): 5). The ascription of full personhood is value laden in that it comments on key issues of morality with respect to behaviour, and in the case of illness, in terms of the root cause of an illness. Those without full membership as a person have reduced "life chances" (Goffman 1986 (1963): 5). The people living with HNPCC in their families interviewed in this study were aware of threats to their person brought by the risk of the disease and their healing narratives addressed this peril. The concept of healing emplotment accounts for more than the illness or therapeutic experience itself. It 47 encompasses larger variables about people's standing as persons as well as the potential for suffering brought about by the risk of disease. Given that suffering is a challenge to personhood, it is not restricted to physical pain (Cassel 1982). This is particularly clear in the case of genetic mutations for colorectal cancer where people who have not yet manifested the disease may still suffer due to the risk of illness and past experience with it in their families. Suffering is a complex personal experience that can come about due to innumerable variables such as the anguish of a loved one, physical agony, powerlessness, hopelessness, homelessness, memory failure, loss of friends, lack of validation, lack of meaning, isolation, the loss of a secret dream, the inability to work and fear of the destruction of an individual as a person (Cassel 1982: 640-641). A person contains many components such as: life experiences, a past (e.g. cancer and death of loved ones), a family with obligations, work history, a culture, physical characteristics (how we look to ourselves and others), relationships, emotions, consciousness, sexuality, a political side, a body, perceptions about the future, secrets, fantasies, hopes and dreams as well as roles such as: father, mother, brother, sister, anthropologist, teacher or orphaned son (Cassel 1982: 642-643). Illness and the risk for it in the case of HNPCC threaten to damage not only people's bodies but also their public and private selves. Therapeutic or illness experience is only a small part of the person. Medicine focuses on the alleviation of the suffering associated with physical injury or disease where a person is chiefly looked upon as a body or in the case of oncology: a tumor. Genetic services offer a risk assessment for the presence of a genetic mutation but do not address the manifold components of suffering described above. Healing and struggling not to be overwhelmed by the suffering brought about by 48 the risk of HNPCC is a part of a larger and more personal enterprise. I argue by focusing on the healing emplotment illustrated in the narratives of those at risk for HNPCC we can more fully understand how people manage the manifold facets of possible suffering brought about by the presence of a cancer in their families. This is a cancer that has already taken many lives in each family studied, that can take the life of a person before their children are grown and a can ultimately be a source of suffering for the children themselves. Reflexive Protection of the Person In modern life30, the self is a reflexive project that is regularly remade as part of an ongoing process of connecting individual and social change. People are consciously aware of their actions and reflexive consciousness is an essential part of human activity: "... to be a human being is to know, virtually all the time, in terms of some description or another, both what one is doing and why one is doing it... The social conventions produced and reproduced in our day-to-day activities are reflexively monitored by the agent as part of 'going on' in the variegated settings of our lives. Reflexive awareness in this sense is characteristic of all human action... All human beings continuously monitor the circumstances of their activities as a feature of doing what they do..." (Giddens 1997: 36). People have a general conception of what it is to be a person that is as applied to their individual self as well as to others. This self-monitoring feature of human action was seen in the narratives of people affected by HNPCC and needs to be included in a complete theory of personhood. Giddens (1997: 15) refers to the present period as high or late modernity, a term which corresponds to the industrialised age where industrialism refers to "the social relations implied in the widespread use of material power and machinery in production processes". The period of high modernity also has other dimensions including capitalism (production of consumer goods with labor as purchasable), surveillance of citizenry (primarily with information) and the industrialisation of war where the state controls the means of violence. The state is a social form that is part of a global system of relations based on territoriality, an advanced capacity for surveillance and a principal custody of the means of violence. The state has created trie organisation whose essential character is the ability to maintain reliable command of social relations over relatively limitless distances of time and space. 49 People at risk for hereditary conditions such as HNPCC do not live their lives in a constant state of anxiety and obsession about their risk status. Giddens (1997) describes how practical consciousness creates a sense of security and trust for all people by "bracketing" out the anxieties associated with the potential chaos and risk of everyday life. Trust gives individuals the courage and hope to carry on as participants in everyday life. Practical consciousness is normally developed in the early life of children who develop a basic trust and confidence in their caregivers that acts as an emotional protection against the unpredictability of the social world: "emotional inoculation against existential anxieties—a protection against future threats and dangers which allows the individual to sustain hope and courage in the face of whatever debilitating circumstances she or he might later confront. Basic trust is a screening-off device in relation to risks and dangers in the surrounding settings of action and interaction. It is the main emotional support of a defensive carapace or protective cocoon which all normal individuals carry around with them as the means whereby they are able to get on with the affairs of day-to-day life" (Giddens 1997: 39-40). This emotional inoculation is built from a foundation of a trust, a kind of protective system for the self and is essential for overcoming the risks of modern life. This protective system, is developed early in life and is, in Gidden's view, largely unconscious. We live in a risk culture (Giddens 1997). The concept of risk here refers to a particular way that the world is socially constructed today: "... the concept of risk becomes fundamental to the way lay actors and technical specialists organize the social world. Under conditions of modernity, the future is continually drawn into the present by means of the reflexive organisation of knowledge environments. A territory, as it were, is carved out and colonised. Yet such colonisation by its very nature cannot be complete: thinking in terms of risk is vital to assessing how far projects are likely to diverge from anticipated outcomes. Risk assessment invites precision and even quantification [as in the case of genetic risk] but by its very nature is imperfect. Given the mobile character of modern institutions, coupled to the mutable and frequently 50 controversial nature of abstract systems, most forms of risk assessment, in fact, contain numerous imponderables" (Giddens 1997: 3-4). Individuals affected by HNPCC have to sort through several different representations of risk: clinical, genetic and bureaucratic, all of which occupy different territories that intersect in the most personal and profound form of risk, lived risk. The imponderables described in the passage above are at the heart of lived risk and it is to these that people affected by HNPCC respond with a number of strategies for minimizing their lived risk. Individuals retain stability in their identity by maintaining a sense of narrative continuity: "A person with a reasonably stable sense of self-identity has a feeling of biographical continuity which she is able to grasp reflexively and, to a greater or lesser degree, communicate to other people. That person, also, through early trust relations, has established a protective cocoon which 'filters out', in the practical conduct of everyday life, many of the dangers which in principle threaten the integrity of the self... A person's identity is not to be found in behaviour, nor—important though this is—in the reactions of others, but in the capacity to keep a particular narrative going" (Giddens 1997: 54). The narrative construction of personhood does not occur in a vacuum. It has to maintain reasonable consistency with the outside world and needs to reconcile between external feedback and the continuing biography of the self. Personhood is sustained through reflexivity about the viability of the chosen story of their self amongst numerous possible stories. The integrity of the self has to be strong enough to withstand social turbulence that challenges the integrity of the story and this is done based on an underlying foundation of trust, courage and hope (emotional inoculation). Fateful Moments and Security of the Self Fateful moments are those where occurrences or situations may have important consequences for a person or a group (Giddens 1997) and penetrate the practical 51 consciousness that keeps risk at bay. These events are very significant for personhood. In the narratives that follow, I will show that fateful moments, such as the diagnosis of colon cancer or a receiving of a positive test for a genetic mutation, undermine the protective cocoon of personhood and during these times external determinants of personhood come into view as powerful. During these occasions, an individual may face decisions (such as choices regarding course of treatment) that may have dramatic consequences. During fateful moments, the emotional inoculation that permits people to act in the risk filled social universe is undermined and their personhood is jeopardized. The narratives that follow will show that people with HNPCC employ complex strategies to regain this emotional inoculation in order to successfully manage risk and promote certainty about their personhood. Their strategies attempt to minimize the influence of more objectified variables on personhood. People resist representations of themselves as only inert parts of the genetic world. Those interviewed did not see themselves as mutational maps that unfold genetic narratives where the self is a powerless victim of a genetic biography. People worked hard to show that their person was not to be understood in terms of HNPCC and they did not want to be known as cancer survivors. Personhood was distanced from the constraints of cancer. People understood themselves as healthy and vibrant people. They would prefer to be understood by other criteria, as examples from the interviews will later show. For instance, one person describes herself as a hot-blooded lover rather than as a victim of tragedy. People focused on the things that they could control such as the frequency of clinical surveillance of their cancer or access to knowledge such as genetic services. Using these techniques, people reinforced 52 their "protective cocoon" so that they could get back to the "very business of living" and the "affairs of day-to-day life" (Giddens 1997: 40). Fateful moments, such as the threat of death or the loss of a close relative seriously undermine the protective cocoon of the person. The intuitive trust in the possibility of proceeding in the inherently risky world is in peril. The strategies employed by people at risk for HNPCC to regain their practical consciousness after facing these fateful moments is a major part of the narratives collected in this study. It appears that the people who have successfully faced these fateful moments emerge with stronger protective cocoons and more secure narratives about their person. As part of this process, they have to overcome the fundamental untrustworthiness of a world that includes HNPCC. The narratives that follow suggest that there many different types of fateful moments such as those that are social threats that fuel anxiety for people at risk for HNPCC. This was seen when friends distanced themselves from the people with cancer. Family members also communicate disapproval of the "bad genes" brought by one 'side' of the family. In these situations, the "ontological security" of the person is seriously threatened (Giddens 1997: 44). Ontological security is important because it is the trust, hope and courage that allow people to carry on. Without this they are disempowered as they stare headlong into an abyss without agency where they suffer with "the pain of helplessness" (Giddens 1997: 46). The security normally brought about by the protective cocoon forms the "very faith in the independent existence of persons and objects" and it is this that makes us human. 53 The reestablishment of security of the self is an essential part of the grand task of maintaining biographical integrity and "to be ontological secure is to possess, on the level of the unconscious and practical consciousness, 'answers' to fundamental existential questions which all human life in some way addresses" (Giddens 1997: 47). The narratives will show that people encountering HNPCC had done more than confront the anxiety of this fateful moment; they in many instances attempt to change the social rules. Their knowledge of these processes appear to be well above the level of unconsciousness in their narratives and it is on this point that I depart from both Bourdieu and Giddens. The family narratives will also show that the presence of HNPCC can lead to both shame and guilt to families affected by this disease31. They will illustrate that some parents experience genetic guilt about having "passed on" the mutation for HNPCC to their children. Others appear to be confronting the danger of shame associated with cancer, the site of the cancer (colon) and the genetic component of HNPCC. Both shame and guilt appear in the narratives of families affected by HNPCC. Shame is a more fundamental crisis for personhood given that it threatens the currency of personhood and is a menace to the biography of the self in society. The interview segments will show that families respond to the peril of shame with a great deal of narrative resourcefulness. The underlying mechanisms of personhood are more far reaching than reflexivity (understanding and re-examining oneself). More fundamentally they relate to the development of a valuable sense of self in society (Giddens 1997). The value of the self can be roughly measured against the various forms of capital: cultural, material and 3 1 Guilt and shame are distinct phenomena. Guilt refers to feelings of transgression based on specific acts that contravene social conventions or in some way violate important others such as family. Shame, in contrast, threatens the integrity of an individual's narrative about their personhood by unveiling negative characteristics (Giddens 1997). 54 symbolic. However, the most powerful variable influencing people's sense of identity is encompassed by a different market whose currency is emotional capital and whose value trades on social connectedness with significant others in pure relationships. Pure relationships take on tremendous importance for people at fateful moments. A pure relationship is defined in terms of several key variables summarized below: ELEMENTS OF THE HIGHER ORDER RELATIONSHIPS SOUGHT BY PEOPLE AFFECTED BY HNPCC • It is brought into existence based on intimate emotional connections with others. It is ideally initiated for no other reason than the rewards of the relationship itself • It is only between two people and the commitment is in the first place only between the two partners involved. This is its purity. It is based on balance and reciprocity with respect to the contribution to the relationship by each partner. • Like personhood, the pure relationship is a reflexive project that is examined by both partners in an ongoing fashion. • The pure relationship is founded on commitment between the two partners and this commitment replaces traditional external anchors such as religious or familial obligations for maintaining a relationship. Commitment refers to a demonstration of reciprocity by both partners. • Pure relationships are successful when there are equal power relations between the two partners and they both have a confident perception of the value of their person. • The pure relationship relies extensively on intimacy (a close and trusting connection between two people). This intimacy is established by a mutual exchange of trust. • The pure relationship involves a substantial amount of collaborative authorship of each partners' life narrative. It involves the building of shared history and the intertwining of life calendars. (Adapted from Giddens, 1997: 88-98) The focus of this dissertation does not allow an extensive examination of the literature on relationships but introduces a reference to the notion of an important personal connection because this was a recurring theme in the narratives. The subjects in this study repeatedly emphasized significant personal relationships with more deeply meaningful qualities. The process of autobiography is at the very heart of understanding the self in society and it is a fundamental part of the theory of personhood being presented here. 55 Persons are not passive objects but dynamic "action systems" and "we are, not what we are, but what we make ourselves" (Giddens 1997: 75-77). A lifestyle is defined as a system of generally regular actions that a person endorses and performs in order to give shape to their chosen biographical narrative. Individuals evaluate the integrity of their personhood by assessing the continuity of their system of practice across the various sectors of their lifestyle. The body is more than a physical object, it is a part of an "action-system", a method of practicing the self as part of the social interactions of everyday life as a part of the process of maintaining a reliable narrative about personhood (Giddens 1997: 99). The function of the body, especially in relation to colorectal cancer, provides feedback with respect to the coherence of narratives about personhood. For example, some people affected with HNPCC were concerned about their ability to engage in sexual activity following their treatment for the disease. Others were concerned about their ability to perform normal physical tasks such as going to the washroom in a conventional fashion (i.e. without a colostomy bag). Given the trends towards increased specialization, one of the dilemmas of the modern world is that there is no ultimate authority to which individuals facing fateful moments can turn (Giddens 1997). As the social world is more organized into expert sectors the dilemma that there is no final authority emerges. Personhood has to be made amidst a "puzzling diversity of options and possibilities" (Giddens 1997: 3). However, while this can be perplexing, it can be simultaneously empowering in that people at risk for cancer take on the task of developing their own expertise with the disease and its 56 management. Individuals also develop more fulfilling biographies of their persons by taking on the role of health promoter in their family. During times of illness, the self becomes even more a reflexive project as the fundamental trust in the health of the body undermines the self (Giddens 1997). People affected by HNPCC attempt to colonize the future by seeking information, controlling clinical surveillance and modifying their diet and exercise. Attempts to colonize the future refer to strategies that people employ in order to manage risks to their person and to guard themselves against worrying about future events that encroach upon and threaten their life situation. Variables that threaten the security of the protective cocoon of personhood are often hidden or sequestered in modern life. Potentially risky or alarming phenomena that are normally sequestered from public view include mental illness, criminality, drug addiction, illness, sexuality and death (Giddens 1997). The sequestration of these experiences are in some cases formally standardized through institutions such as hospitals, cancer agencies or hospices where variables such as illness, cancer and death that threaten security to personhood are concealed. Hospitals are places where individuals who have had the fullness of their personhood invalidated in some way are sometimes sequestered. Frightening things that bring the possibility of risk to the self, such as cancer, are hidden away to reduce the anxiety that they create. The colonization of the future reaches its final frontier at sickness and death. 32 People with an increased risk for cancer have an elevated sense of the power of fortune and, as a result, they seek to counter this external power. The danger of death not only Fortune refers to external factors, such as death, that are out of the control of individuals (Giddens, 1997). 57 threatens powerlessness for people at risk for HNPCC, it also represents a tremendous loss of control for the professionals that provide medical treatment. Death is the "great extrinsic factor of human existence; it cannot be brought within the internally referential systems of modernity... it is nothing more or less than the moment at which human control over human existence finds an outer limit" (Giddens 1997: 163). Sickness and death eventually touch us all and it becomes impossible to sequester ourselves from these forces. As death becomes an imminent possibility, an existential crisis of personhood comes to pass: "The frontiers of sequestered experience are fault lines, full of tensions and poorly mastered forces; or, to shift the metaphor, they are battlegrounds, sometimes of a directly social character, but often within the psychological field of the self (Giddens 1997: 168). We survive the threat of absolute extrinsic factors by becoming increasingly reflexive and by enhancing the authorship of our biography. Nowhere are we more clearly the authors of ourselves than during fateful moments that threaten to uproot us from our social world. As the interviews illustrate, events that biologize us dramatically affect life planning and make the reflexive aspects of person construction even more prominent. The introspective process of personhood has to be regularly re-written to accommodate the ever-changing experiences of the self in the course of everyday living (Giddens 1997). People are not victims; they are active and critical of their experiences and they are highly motivated to maintain control of their biographies. The subjects of this study were powerfully motivated to fight the potential oppression of HNPCC. During the fateful moments associated with HNPCC, the balance between the psychogenesis and sociogenesis of people's autobiographical narratives were abruptly tipped towards the ultimate extrinsic variables of disease and death. 58 Emancipatory politics have as their main objectives the liberation of marginalized groups from their disadvantaged conditions and the eradication of class divisions in opportunity (Giddens 1997). Their main goals are to achieve "justice, equality and participation" (Giddens 1997: 212). Life politics, in contrast, focuses not on social conditions but on "the politics of choice" (Giddens 1997: 214). Here, human beings do not simply originate from the conditions of their existence, but are given ultimate authority. Life politics do not focus on how we live but instead they determine how we should live. This approach assumes that individuals are reflexive participants and that the social world is itself a reflexively organized interdependent community of participants. Life politics do not ignore the power of institutions and social conditions in shaping self-identity but they highlight with hope the possibility for collective authorship in the creation of these "internally referential systems" at the core of modern life (Giddens 1997: 225). At the heart of this political agenda are the "rights of personhood and individuality, which connect back to the existential dimensions of self-identity as such" (Giddens 1997: 226). The people interviewed in this study have shown that they can author themselves at fateful moments in their lives. They have also demonstrated that neither biology nor social conditions are sovereign in defining personhood. The organizing principle at the core of this social process is a fundamental human need to be meaningful, to have hope, and to be valued by significant others. This research illustrates that everyday people construct and reconstruct their notion of who they are in relation to their health experiences, their goals and understanding in relation to social values about what it is to be a person, a set of understandings that are configured and reconfigured during the process of person-making. The process by which people sculpt their sense of personhood pertains to a number of key variables goals and values including those that relate to their vocational trajectory, their family role, their spouse, or their ability to obtain income. People also create their sense of themselves with an awareness of key variables that undermine their protective cocoon (e.g. given that they may have "caused" this illness in their children brings about a kind of "genetic guilt"). The patient and family narratives will illustrate the fact that an individual does not in a genetic sense have any control over the cause of their illness is sometimes positive and sometimes negative. The next section focuses on the work of Pierre Bourdieu as it pertains to the theoretical framework for this study. Institutional Consecration Clinical roles, programs and specialties are institutionally consecrated (Bourdieu 1999). This notion will be important later when interpreting the narratives where oncologists describe their focus on tumors rather than patients or families and for understanding the reliance of medical practitioners on the Hereditary Cancer Program as the sole provider of services that are understood to be genetic. An examination of the various forms of social capital (Bourdieu 1995) is also undertaken below to provide the groundwork for introducing the concept of emotional capital and for understanding the relationship between medical, genetic and lay perspectives on HNPCC. The subjects of this study were well aware of the lower status of lay-perspectives and they readily acknowledged this difference in social position with various self-effacing statements when referring to them in interviews. A distinct difference between lay knowledge and expert knowledge in terms of social position was observed in nearly every realm of this research. This difference is institutionally constructed as illustrated 60 by the initial failure for this research project to obtain ethical approval through the Clinical Investigations Committee of the BC Cancer Agency. The CIC initially rejected the research on the grounds that a provision had been made to allow participants (family members affected by HNPCC), upon request and with written consent, to be identified by name and to be co-authors of publications. There were two reasons stated for this rejection. Firstly, the importance of protecting the institution and patient with respect to confidentiality was declared. In this instance, patients are primarily understood as sources for health information, objects for treatment and variables requiring legal risk management with respect to breaches of confidentiality. Secondly, patients were described as lay-people without the necessary expertise to publish research articles. The language of medicine is technical and clinical and is similar to the official national language of a country. The language of lay-perspectives is like an unofficial local dialect in the clinical setting and it is subordinate, problematized and has less value. The officialization of language in the medical and genetic culture maintains legitimacy, authority and power. Unofficial languages and ways of understanding are de-valued. As patients and families are drawn into the clinical setting, professionals see them as vessels from which lay-perspectives need to be emptied so that medical and genetic knowledge can be poured into them. Lay-perspectives are rejected as "slang and gibberish" and the more public manners of describing points of view are decreased in value (Bourdieu 1995: 49). The linguistic capital of medical professionals is heightened relative to those of family members and patients. Linguistic capital is a special example of cultural capital. Cultural capital in this case essentially refers to a person's credentials (e.g. level of 61 education: medical doctor, oncologist or genetic counselor). As the interviews with people affected by cancer will show, a deficiency in cultural capital for family members who take on new roles such as health promoter in the family sometimes creates tension in families. Words are moored in particular places in the social space and only certain people are consecrated with the social privilege to employ them (Bourdieu 1995). Just as only a physician can pronounce someone dead, only certain medical professionals are consecrated with the authority to perform certain tasks in genetic and medical culture. The interviews in this research show that both professionals and families pay homage to this social guide. Only a genetics expert can diagnose HNPCC and even the physician who treats someone for cancer will not provide their patient with a precise diagnosis of their condition if they are not consecrated with genetic authority. They will leave this task to someone vested with the power to perform this duty. In many cases, no such person of authority exists and the diagnosis is not made until much later or it is never made at all. In institutional settings (e.g. schools, churches, hospitals, genetics clinics) certain individuals (e.g. teachers, priests, doctors, genetic counselors) are delegated with the authority to carry out key responsibilities (Bourdieu 1995). For instance, only a designated person can perform the task of christening a yacht. Similarly, at the College of Physicians and Surgeons, only a physician (the President of physicians) can deliver a reprimand to a physician guilty of professional violation. It would be inappropriate if a passerby were to spontaneously break a bottle of champagne on the side of a boat at a christening ceremony or if a public member of the College of Physicians Council reprimanded a physician. In these settings, only the designated representative has been 62 vested with the social authority required to perform significant tasks. In the genetic and medical cultures, there is a crisis in the social field given that there is no apparent designated expert or program to address families at risk for HNPCC. Just as it would create a social uncertainty for a member of the public to perform a Catholic Mass, there is also a social dilemma when families appear to know more about the disease that they are at risk for than the socially authorized representative, the medical practitioner. This research shows that oncologists do not, as a rule, diagnose HNPCC in patients that they treat for cancer because they think that someone else is vested with the cultural responsibility for performing this task. Social Capital There are a number of different types of cultural resources or capital that people seek out. Economic or material capital refers to assets in the commodified forms of wealth such as currency, stocks, belongings or property. Cultural capital refers to non-material assets such educational and technical credentials, insight or expertise that have been acquired. Symbolic capital (alluding to reputation, distinction, prominence) refers to honour or prestige that has been amassed. Symbolic capital is seen and understood in the power that is held by individuals "in proportion to the recognition they receive from a group" (Bourdieu 1995: 106). Symbolic power is rooted in the relationship between those who use it and those who surrender to it. Another important form of capital, emotional capital, which was not outlined by Bourdieu is also very important as the narratives of people at risk for HNPCC will show. Medical doctors diagnose and patients are diagnosed. In this instance, symbolic power is more than an issue of the words that are utilized to diagnose. It is a reflection 63 of the organization of the social space. Patients cannot diagnose disease even if they have the words to do it; the performance of this act is the exclusive social privilege of the physician. A person cannot officially die until a doctor medically pronounces him or her as such. Someone who does not occupy the magical space sanctioning this power, such as a sociologist, cannot accomplish this pronouncement. I hope to show that social actors at least in part strategically negotiate these social assets. They are cultural resources that influence a person's value. The data collected in this study demonstrates that people knowingly engage in strategic actions in order to enhance and maintain the optimum value of their person. Institutions make differences into legitimized distinctions, that is, they have as their main consequence the effect of "naturalizing" essentially social phenomena: "One can see in passing that, as the process of institution consists of assigning properties of a social nature in a way that makes them seem like properties of a natural nature... such as man is to women as sun is to moon. Thus sexually differentiated rites consecrate the difference between the sexes,: they consitute a simple difference of fact as a legitimate distinction, as an institution" (Bourdieu 1995: 119). The social purpose of institutions, then, is to consecrate difference: "To institute, in this case, is to consecrate, that is, to sanction and sanctify a particular state of things, an established order, in exactly the same way that a constitution does in the legal and political sense of the term. An investiture (of a knight, Deputy, President of the Republic, etc.) consists of sanctioning and sanctifying a difference (pre-existent or not) by making it known and recognized; it consists of making it exist as a social difference, known and recognized by the agent invested and everyone else" (Bourdieu 1995: 119). The accomplishment of the institution is to achieve a kind of social wizardry that creates credentials such as medical or professional qualifications that are repositories of social value. The consecration of credentials accounts for why the complex understandings of people directly affected by disease are referred to as "lay-perspectives". The impact of 64 the institution accounts for what appear to be problems in communication between treatment professionals and the people experiencing disease. Institutions are elaborate performances that characterize and communicate socially positioned identities for individuals. They can magically create boundaries and some of these identities, such as that of the cancer patient, can be more than medically dangerous, they can be socially fatal: "All social destinies, positive or negative, by consecration or stigma, are equally fatal—by which I mean mortal—because they enclose those whom they characterize within the limits that are assigned to them and that they are made to recognize... That is also the function of all magical boundaries: ... to stop those who are inside, on the right side of the line, from leaving, demeaning or down-grading themselves... This is also one of the functions of the act of the institution: to discourage permanently any attempt to cross the line, to transgress, desert, or quit" (Bourdieu 1995: 122). As the narratives of those affected by HNPCC will show, people attempt to avoid traveling across magical institutional borders into the devalued territory of the cancer patient, the social space where personhood sometimes takes leave forever. Meaningfulness and Meaninglessness An implicit question emerges from the narratives of people at risk for HNPCC: why are the various forms of emotional, social and family support: cultural capital so valuable to people? Meaningfulness and its opposite, meaninglessness, both appear to be important components of an explanation: "... could rites of institution, whichever they may be, exercise their power... if they were not capable of giving at least the appearance of a meaning, a purpose, to those beings without a purpose who constitute humanity, of giving them the feeling of having a role or, quite simply, some importance, and thus tearing them from the clutches of insignificance?" (Bourdieu 1995: 126). 65 A notable feature of the conversations with people affected by cancer interviewed in this study was their prevailing contemplation about meaningfulness not so much regarding their illness experience but with respect to life itself. Meaninglessness is the scorned correlate of meaningfulness. While those with powerful personhood enjoy the privilege of increased cultural capital in its various forms, there is a corresponding category of people without these benefits: "But, through a kind of curse, because of the essentially diacritical, differential and distinctive nature of symbolic power, the rise of the distinguished class to Being has, as an inevitable counterpart, the slide of the complementary class to Nothingness or the lowest being" (Bourdieu 1995: 126). The position of lower being means that individuals such as those with hereditary colon cancer are in danger of being placed at a social distance from others. This results in a kind of social death and is due to the three distinct blemishes of HNPCC: the shame associated with the site of the colon cancer, genetic guilt and the dread connected with cancer in general. These three factors came up repeatedly in the narratives of people affected by HNPCC and have a direct impact on the tenure of personhood. Those affected by HNPCC are aware of these social hazards and they work hard to avoid lasting injury to their person from these threats. People's narratives about HNPCC will show that they do not just describe their understandings of their experiences with illness; they illustrate a social strategy within a system of social strategies in relation to personhood. The strategic fostering of personhood by those affected by HNPCC is part of a wider strategy for maximizing cultural capital. The history of family experience with hereditary cancer is powerful and almost always include influential events such as the death of a close relative from HNPCC. The conditions of family experience with HNPCC lead to such phenomena as 66 pre-selection, self-selection and ideas about cause that are illustrated in the patient and family narratives. Pre-selection refers to a process where family members identify an individual they believe to be a likely candidate to manifest a disease (Kessler and Bloch 1989). Self-selection is when an individual identifies himself or herself as the most likely candidate to develop a disease. Creating Meaningfulness: Emotional Capital During transformative periods in their lives, people actively and consciously shape themselves. The various forms of capital: economic, cultural, symbolic coupled with the search for significance and the desire to avoid a sense of nothingness are all useful theoretical contributions to a theory of personhood. At these times, people work hard to create subtly different types of capital from those precisely described by Bourdieu. The most important example is that of emotional capital. Emotional capital is obtained through personal connections with spouse, children, friends or other family members and I suggest is embodied in the pure relationship described by Giddens (1997). The pure relationship provides a tremendous quantity of emotional capital. During the siege of serious illness, people attend to threats on the economic and symbolic value of their person but they also create something more, a sense of power that is related to the very core of who they are. At this point, the self becomes a renovation project and in these instances people's imagination is more powerful than the structures that surround them. For a moment people are able to liberate themselves and make their family more important than their career and the pursuit of knowledge and autonomy more powerful than medical treatment. 67 In chapters four and five, the interviews with individuals at risk for HNPCC suggest that they actively construct who they are in their narratives. As a result, the process of personhood construction is a central aspect of healing emplotment. Individuals are able to re-define the economy of personhood so that emotional capital becomes more valuable than symbolic, cultural or material capital. This is not to nullify the array of social conditions that typically compel people to "cut their coats according to their cloth" nor is it to relegate the study of personhood into a fairy tale where anything is possible (Bourdieu 1999: 65). It is to assert that a complete account of the self must also include in its analysis an examination of the role of knowing strategic (reflexive) action. An intentional organizing tendency of the self is a central element in the narratives of people at risk for HNPCC collected in this study. The interviews in this study show that people at risk for HNPCC are aware of structures in the social space and that they react to them strategically. In order to further focus on the reflexive component of people's narratives about their experiences with HNPCC, I have relied upon the work of Anthony Giddens. Ultimately, I plan to use the data collected in this study to advance an understanding of personhood that incorporates both the self in social structure (Bourdieu 1999) as well as the inner world of the self (Giddens 1997) to explain people's narratives about the perils of HNPCC. This research has led me to a borderland between several fields that include anthropology, psychology and sociology. The focus here is on the relationship between the self as the site for experience (in this case a serious disruption in health brought on by cancer or the risk of cancer), the network of family and friends (that provides the cultural 68 capital), and the clinic (in which the self is emploted therapeutically but not socially or emotionally). My reconstruction of individuals' accounts is intended as a composite portrait of a process by which everyday people create and recreate their self in context, a social action that is epitomized by the process by which personhood is produced in the circumstance of everyday life. Personhood is not a fixed or unchangeable thing that is beyond the pale of human relations. It is instead a process and social action that provides social actors with a palate to create a working drawing of themselves that they revise again and again. The very act of writing a thesis and looking for themes is itself an act of social construction and my academic interpretation of the subjects' narratives is a way of appropriating power. In this process, I hope to avoid superimposing too much orderliness onto elements of experiences that might actually be arranged more intuitively by the subjects themselves. Person-centred ethnography has been used in this study to examine narratives as a strategy to capture the process by which people make themselves and culture makes them (and vice versa). People's narratives incorporate information gathered from a myriad of different cultures: genetics, medicine and oncology as well as wider familial experiences and cultural ideas that form their person. The portrayal of personhood here is, after all, only a snap-shot in time. This is admittedly one of the limitations of the research; it is only a series of pictures in time. The narratives that are shared provide a glimpse into the process by which families affected by HNPCC were authors as well as subjects in this portrayal. With the eventual advent of local genetic testing and raised clinical consciousness of the needs of these families, the landscape of issues associated with HNPCC is likely to change in the not too distant future. I am hoping that this research 69 will have provided an impression of the lived experience of families affected by HNPCC before genetic and clinical services were widely and consistently available for them. This study describes how they survive this illness, how they engage their personhood and how they become the stewards over their own survival through healing emplotment. This dissertation is part of their story. The theoretical approach for this research is a departure from analyzing narratives about experiences with illness or treatment. While illness narratives highlight patient experiences and therapeutic emplotment focuses on medical plots, they both tend to concentrate on relatively specific experiences that are somewhat separate from larger life narratives. In healing emplotment, the process of person construction is pivotal. The framework proposed in this study begins with the premises that "the self is the narrative centre of gravity" (Dennett 1991: 426) and that the protection of personhood is central to the process of healing. By focusing on the importance of personhood, healing emplotment attempts to develop the discussion beyond illness and therapeutic narratives to a position that will allow physicians and patients to understand one another more effectively: "All this might help us understand the multitude of daily interactions in which people hurt each other because they ignore what they are unprepared to hear. How does it help us figure out how they could heal each other? What change might enable people to realize what stakes are important to someone else, and then to realize that these stakes also matter to themselves, if only because they matter to someone else?" (DeCosse 1995: 19-20) The theoretical framework proposed for this study encourages patients and physicians to see themselves as participants in each other's stories (DeCosse 1995). This chapter has provided a theoretical framework for examining the experience of people at risk for HNPCC in terms of suffering, healing and personhood. It has 70 offered a short discussion of what it is to be a person as well a brief overview of some variables such as fateful moments that can compromise a person. It has also reviewed some established theoretical areas about how people attempt to maintain their ontological security and a protective cocoon of their self (Giddens 1997). This study attempts to provide evidence that this is part of an ongoing reflexive process for people at risk for HNPCC. I have also entered into some new territory by introducing the concepts of healing emplotment and emotional capital. I argue that the interviews with people at risk for hereditary cancer show that many are searching for and place value on emotional capital as an important part of what appears to be a healing emplotment process. Pure relationships (Giddens 1997) appear to be one of the sources of emotional capital and the narratives of people at risk for HNPCC appear to show that they seek to nurture this type of relationship. A discussion of the institutional consecration of roles and a number of forms of social capital (Bourdieu 1990; 1995; 1999) was reviewed to aid in the interpretation of the clinical narratives. The importance of cultural capital will become evident in chapters 4 and 5 when it is seen that people at risk for HNPCC who take on key roles of information provider or health care promoter in their families sometimes encounter obstacles because they lack the cultural capital that is enjoyed by clinicians. Underlying the theoretical orientation employed in this study is the position that the self is a reflexive project and that people's narratives about their experience with hereditary cancer tell us something about how they actively maintain personhood. The coming ethnographic chapters reviewing patient and family narratives attempt to provide evidence for this position. The next chapter provides an overview of the institutional and 71 systemic context of the study and, in particular, its influence on the delivery of medical and genetic services. 72 CHAPTER THREE: THE CLINICAL CONTEXT: THE BC CANCER AGENCY, HOSPITALS AND THE WIDER H E A L T H CARE ENVIRONMENT This chapter depicts some of the institutional and systemic arrangements that affect access to clinical and genetic services by patients and the practice of health care by professionals. In this section a definition for institution is developed to illustrate some of the structural arrangements in B.C. and their impact on understandings and experience of illness, sickness and disease pertaining to HNPCC. It is argued that institutional systems affect the ownership of health data (e.g. CT Scans), the roles of various medical specialties, the continuity of clinical care, access to genetic services and the various ways that risk is defined. An additional type of risk, institutional risk, is introduced in this chapter. A distinction is made between the practice of medicine and genetics in relation to HNPCC. Ultimately, an argument is put forward that they have different levels of symbolic capital and that they may represent two distinct cultures. By describing a culture of oncology and medicine, I do not intend to reify the notion of culture. The definition being relied upon for culture in this study is interpretive and refers to a busy intersection of understandings and an ongoing negotiation of meanings. Certainly, it is not possible to step into the same cultural river twice (Hannerz 1992: 4). However, there do appear to be cultural hot spots of shared meaning that are shared within but not necessarily amongst groups of medical and genetics professionals. They appear like localized networks of negotiations where there are identifiable shared understandings about key topics such as the role of an oncologist in treating cancer and the role of a genetics expert in addressing hereditary cancer. They also result in two different foci: for medicine it is the patient and for genetics it is the family. I am using the idea of a culture of oncology and medicine in order to illustrate two quite different 73 intersections of understanding and meaning with respect to HNPCC. As well, I wish to acknowledge that genetics and medicine are not entirely distinct from one another and that they intersect in specific areas, such as at the Hereditary Cancer Program and at the point of referral for services. However, this chapter as well as chapter six highlighting clinical narratives will attempt to show that medicine and genetics are, as a rule, relatively distinct systems of meaning and understanding for HNPCC. Medicine is based on clinical treatment; genetics is a realm that oncologists treating colon cancer believe to be better left to those with genetics expertise such as the professionals of the Hereditary Cancer Program. In fact, it appears that the only place where the cultures of medicine and genetics truly intersect in practical terms and cross-fertilize one another is within the Hereditary Cancer Program itself. In the HCP, family practitioners, pathologists, geneticists, genetic counselors, social workers and oncologists hotly debate and discuss the issues associated with genetics and medicine in the treatment and management of families at high risk for hereditary cancer. The Hereditary Cancer Program The Hereditary Cancer Program began as a research initiative and has gradually become an accepted program of the BCCA. It is still considered to be a research program but in many ways, in light of discussions by the HCP steering committee about level of service and standard of care, it is implicitly thought to be a health service. Certainly, family members interviewed in this study believe the HCP to be a service. 74 The HCP is a program that that exists within the B C Cancer Agency pictured below: Figure 3: B C C A (Photo courtesy of the B C C A library) By gaining official status as a program in the B C C A , the HCP has taken on the responsibility for providing expert advice and services to families thought to have family cancer syndromes. That is to say, the onologists interviewed in this study believe that the HCP was the major referral centre for genetics services, that is, for patients and families in need of special clinical or genetic advice and care for hereditary cancers. Therefore, in practice, by having defined their research initiative as the Hereditary Cancer Program, the B C C A has simultaneously created a perception in the medical community that the HCP are the experts for treatment of most hereditary cancers including HNPCC. In 75 actuality, without adequate resources, the HCP is unable to fulfill all the needs for services for all hereditary cancers. Its main focus has been on hereditary breast cancer with only recent possible movement towards HNPCC. In clinical practice, oncologists and physicians do not typically distinguish between HNPCC and sporadic colon cancer in their treatment, plan, and therefore, genetics is not very influential in their practice. Clinically, they perceive HNPCC and sporadic CRC as indistinguishable. The HNPCC factor is at most an interesting academic departure from the real business of treating a presenting disease in an individual patient. Patients are often not told about HNPCC by oncologists; some patients will not have heard the words HNPCC until they meet a genetic counselor more than a year after they have been diagnosed, treated surgically, and recovered from the disease. Addressing genetic risk and overall family experience with this disease is seen by oncologists as almost a frivolity and certainly as the responsibility of someone else with different expertise. Families who have experienced colon cancer may be told, on the basis of their family history, that they appear to have a family cancer syndrome. However, discussion of genetic illness and family cancer syndromes is usually felt to be the responsibility of someone other than the treating physician, such as the Department of Medical Genetics or the Hereditary Cancer Genetics Counseling Program. Physicians sometimes make referrals to genetics programs but often patients are told about these services and expected to refer themselves. These genetics counseling services that provide specific information about genetic diseases such as HNPCC have long waiting lists (ranging from eight months to eighteen months). 76 Notwithstanding the HCP's inability to provide overarching genetics services for all hereditary illnesses in the province, they are, unquestionably the experts on genetic cancer in British Columbia. Relative to the oncologists interviewed in this study, their knowledge about HNPCC is superior. They may, in this sense, represent the future level of knowledge for the wider population of clinicians in the province. The HCP is a very small program with approximately 40 multidisciplinary participants including representatives from the social sciences, philosophy and numerous clinical specialties. In contrast, there are over 9,000 medical doctors in the province so the HCP is clearly a highly expert group with respect to hereditary cancer. Institutions as Bundles of Services that Consecrate Clinical Roles The two cultures, genetics and medicine appear to differ with respect to how they define the object of their professional responsibility. The medical clinicians tend to see the treatment of disease as their object. In the case of the oncologist, this is the treatment of cancer, the attempt to eradicate cancer tumors. The genetic culture, in contrast, focuses on the genetic mutation. However, the genetic culture includes the family as their responsibility. These two cultures are not entirely distinct at the HCP. Many of the participants in the decision-making of the hereditary cancer program are, for example, medical clinicians. However, outside of the HCP, it appears from the interviews conducted in this research that most clinicians are part of a culture that is distinct from that of the genetic culture, that of medicine. In this sense, HCP is in a borderland but this, I found out, was an unusual group of professionals who had essentially time-traveled to the future where the family truly is the 77 object of medical attention and where genetics is relevant. Consider the following illustration: Figure 4: Family (Photograph of a family with genetic cancer provided courtesy of the HCP) The picture, provided by genetic counselors, illustrates that they understand that the disease occurs in the family. However, the world where the family is the object of clinical attention is a distant one (it might possibly exist at some point in the future) and it doesn't really exist in the present BC healthcare system. Institutions include an assortment of services as well as technologies that directly consecrates the roles of its membership. Furthermore, the institution, using this expanded definition, can determine the focus of attention of its members, in this case, the 78 object of the clinicians in a hospital. In particular, the BCCA further configures the focus of clinicians towards the treatment of tumors (and disease) rather than whole people or families. If a service is not available for a disease, then the disease for the patient and practitioner, in some senses, does not exist. The services and technologies relevant to HNPCC might include: colonoscopies, support groups, genetics counseling, genetics testing and expert clinical advice for families at risk for this disease. In many ways, HNPCC does not exist in the institutional landscape of medical care in British Columbia. The clinical narratives discussed in chapter five of this dissertation suggest that clinical specialists who treat colon cancer do not readily distinguish HNPCC from sporadic colon cancer. Nor, as the interview with a gastroenterologist in the same chapter illustrates, are they always aware of what services are available for families with HNPCC. Virtually no oncologist could describe any specific stigma pertaining to HNPCC nor did they know whether a support group existed for people at risk for this disease. Some clinicians reported that there is a support group for colorectal cancer (there is not) and some even reported that there is genetic testing for HNPCC at the BCCA (there is not). There is not a formal program for testing (or actually even for counseling) for HNPCC in high-risk families. Families with HNPCC are at best treated as cases of sporadic colon cancer and, at worst, not treated at all. No one really knows how many families are likely to have HNPCC in BC. Estimates of incidence to date have been done almost entirely based on epidemiological calculations. There is not a registry of people with HNPCC (although some oncologists interviewed believe there is). 79 Types of Risk Epidemiological and Clinical Risk Several different types of risk have been described. For instance, Gifford (1986) has noted that there are three types of risk: epidemiological, clinical and lived. Epidemiological risk is defined as the amount of risk facing a population. It is usually stated in terms of incidence per 100,000 individuals. Clinical risk refers to the chance that a disease is manifested in a particular patient. The following passage from an interview with a medical oncologist illustrates clinical risk: Interviewer: In either of those cases, um, what kinds of things ... or, in both cases, would you discuss with the patient? Would you, for example, would you discuss prognosis with them? Medical Oncologist: Oh, certainly. The first thing I ask a patient is what is their understanding of their, of their diagnosis. And that varies, depending on who the patient... who has sent the patient to you, and, um, you know, what kind of patient it is. But, so, I'll ask them, you know, what's their understanding of the disease. And then I'll tell them what the surgeon found at the time of, of the OR, and I'll tell them what the pathology report says. Um, and then I'll explain to them that they fit into either a higher risk group for the disease coming back, or a lower risk group. And if they fall into a lower risk group, then I'll explain that they don't need any additional treatment. Um, but that they need to. have close follow-up. And I'll explain what that follow-up is, and I'll refer them back to their family physician. If they're in a higher risk group, then I explain why they're in a higher risk group, and I usually give them some estimate of, of their risk of the cancer coming back in the next five years. And I explain how adjuvant chemotherapy can improve the chance that they will be alive and well without cancer, by twelve to fifteen percent. And I explain the chemotherapy to them, the schedule and the side effects, and [pause] that's about it. That's about all we do in the first visit. And then, usually, um, if it's just the first visit, we won't dis ... and it's a patient that going to get chemotherapy, we won't discuss follow-up and so forth until they're as ... discharged from the chemotherapy clinic. And if it's a patient who doesn't require adjuvant chemotherapy, then we'll discuss, you know, the risk to the family and so forth, on the first visit. But if it's a patient who does require chemotherapy, often that will come out in subsequent visits. Interviewer: So, exactly how, how is it that you, you describe risk to them? 80 Medical Oncologist: Oh, urn, heh. Most patients, I'll explain that, urn, currently there's no evidence or sign of cancer in their body. But if their lymph nodes are involved, because this is where the risk becomes a problem, um, that's a sign that, um, the cancer, uh, is at increased risk of coming back in the future. And, given that patient's particular pathology, I'll give them some indication of what the, what the chance is, statistically speaking, that that cancer could come back. And then I'll explain that we have no way of knowing for any one individual patient whether the cancer will come back or not. Um, and because we, we don't know that, we give all patients who have their particular stage of cancer, um, adjuvant chemotherapy. Interviewer: So you essentially are describing to them, trying to translate to them, about epidemiological risk. Medical Oncologist: No, not... I'm not sure you would call it epidemiological risk. I mean, just the results of the studies that have been done in stage three colon cancer. Is that considered epidemiological risk? [emphasis added] (5 July, 2000) The oncologist describes some of the variables that are used to determine clinical risk including: lymph node involvement and the stage of their cancer. The interview also demonstrates that clinicians are not necessarily comfortable in their knowledge of epidemiological risk. It may also refer to the risk of re-occurrence of a cancer that has been treated or that is considered to be in remission. Oncologists are not necessarily familiar with epidemiological risk, except in passing. For example, when questioned about the number of HNPCC patients that they would have treated, most oncologists said that they had not ever treated one. When asked about the number of HNPCC patients that exist based on an epidemiological calculation, oncologists seemed puzzled or flustered by such an estimate. This question appeared to create some dissonance for clinicians between their original answer stating that they hadn't treated someone for HNPCC and the realization based on their spur of the moment epidemiological calculation that it was probably the case that they had encountered someone with this disease in their practice. 81 Lived Risk Lived risk refers to an individual patients' experienced and perceived risk. This type of risk was the focus of my research. Consider the following example from an interview with a woman who had been treated for colon cancer: Affected Female: Yeah. Yeah. Yeah. And, uh, I, I think, um, my experience, too, has been that, um, because of having this, and, and this isn't just sort of a, a, a small, sort of, anec, anecdote, that, uh... Because it's, you know, having cancer, and because of the whole thing, and because of, you know, you're at higher risk for uh, uh, uh, other cancers, you know, you know, internal organs. But I had a mole. A small mole. That, um, was itchy. And it seemed to me to have gotten larger. But it wasn't... it didn't look, um, you know, you know, it wasn't irregular, or dark, or, you know, anything. But it, it itched, and it bothered me quite often. And uh, I sort of had focussed on it. As, as, uh... I wanted it removed. And I had a really hard time, um, getting it removed. It took me two years to, to get it removed. Um, because it was, you know, my doctor would say, "No, there's no, nothing wrong with it." And, and I, I think I asked three times. It took me was, "No, there's nothing wrong with it. No, it's fine." Uh, and to me, it was, it was, uh, "Okay, fine." But I just wanted it removed. And it was, it was, um, to me there was a lack of understanding that, that considering the ... my background, that even if this wasn't, you know, partic ... that it was a, it, uh ... Interviewer: It was symbolically important. Affected Female: It was symbolically important. And that every time it itched, I remembered cancer. So it, it was, um, uh, [pause]. That was, I thought that there wasn't, there wasn't a whole lot of, um, of understanding of, you know, what my, my mental state might be. Or what, you know, my perceptions of, you know how big this mole can get. [Laugh] Interviewer: Sure. Affected Female: I'd already had, uh, uh, cancer. And I knew, and you know, it was, it would be [...] I knew. I still... what if, you know, what if this [... ] Uh, and there it is. Uh, you know. So, so, it was always sort of... and I didn't like to be reminded, constantly of, uh, my mortality. [Laugh] So ... Interviewer: This had more significance to you... Affected Female: It had more significan... Interviewer: Than it did to them. 82 Affected Female: Yeah, it had more significance to me than just, you know. And I just, um... and then it turned out that, um... I made an appointment, uh, with my dermatologist, uh, myself, um, because they also, they won't pay for moles unless they're malignant. And so you have to go through this whole rigmarole. And I said, "I don't care. I'll pay for it. I just, I just, I just want it taken off." You know. Um, and even with, you know, with, with the dermatologist, he said, um, "I can tell you right now [interview subject's name removed]..." Interviewer: Deal with it. Affected Female: Tell me. Tell me. Just... I know, I realize it's pretty easy to take it. Just take it away. Just, just take it away, and I'll be really happy. [Laugh] And, and, uh, uh, I laughed at this point, because he said it would probably leave a scar. I mean, it was a tiny little mole, right? I have this huge hemicolectomy scar. [Laugh] Like, look, it was right here. And I, I, I don't think it's going to make much difference. At this point, it can leave a scar. Leave a scar, charge me $100. Just, just take it away. I know I'm overreacting. So, humour me, just humour me. Um. Uh... Yeah. Yeah. Yeah, that was, uh, um [pause] Um, yeah. That was, you know... um, and that... it went on for a fairly long time. You know with, you know, I'd go every ... and then I'd feel stupid. You know I'd think, "Oh, that's just neurotic." And then I'd go in and I'd ask again. And, uh, there still wasn't anything wrong with it. I just wanted it off. You know, I just really really wanted, uh the whole ... Interviewer: It was very significant. Affected Female: Yeah. Interviewer: On many levels. Affected Female: Yeah. Yeah. And, I... Yeah, and I, I think, too, it's ... you know, there are, um ... I just thought of this actually, too. Is that, that, you know, at this time.... it was also that, um, like, I'll be forty in June, right, so this is all been really early. But,uh, like, my grandfather died at forty-eight. My father died at forty-eight. And, so I had this ... there was also this little thing going, "I wonder, uh, if that's significant." [Laugh] Interviewer: And these are real things for you. Affected Female: And these, these are ... you know, and so, so you have this, coming up to that age, and, uh, and then having, you know a colon cancer. In situ, but still it... for me that counted. Uh, and, uh, yeah. So, you know. And I 83 think that was .. [pause] that there wasn't really a lot of [long pause]. Yeah, a lot of concern as to how that would actually, you know affect [... ] And then, like, like, and then, you know, I, I thought maybe, you know, if I kept on about this mole long enough, you know, the doctor would say, "You must be concerned about something." (Interview with an Affected Female, 20 March, 2000) The age of death for her father and grandfather were significant as was the mole in her lived risk. The example shows that lived risk may be at odds with clinical and epidemiological estimates of risk but is still a very large part of the overall cancer experience for patients. Lived risk has very real ramifications within the patient and family lifeworld and it may, for instance, lead a patient to have prophylactic surgeries (e.g. colectomy, oopherectomy or mastectomy). Lived risk can also affect clinicians. For example, according to one general practitioner from a rural region of BC, some patients choose to have mastectomies rather than travel to the urban centre where less invasive surgeries are available. This occurs partially due to the fact that the main specialist in this area, a surgeon whose mother experienced breast cancer and had to have a double mastectomy has herself had a mastectomy and advises all her patients to follow this same course of treatment. As a result, nearly all the patients with any form of breast cancer have mastectomies regardless of its clinical efficacy. In this regard, lived risk can have clinical ramifications and it might be useful for clinicians to take this type of risk into account when engaging patients about their treatment and considering the patient's understandings of their cancer risk. The efficacy of mastectomies even in the case of women with breast cancer is far from conclusive. In fact, clinicians are not unanimous in their support for mastectomies even in cases of women with advanced breast cancer. Breast cancer still occurs in women who have had mastectomies and their long-term survival rate is not necessarily 84 increased by this procedure (Interview with Medical Leader of the Hereditary Cancer Program, Radiation Oncologist, 2000). Genetic risk is another type of risk that might be described as a special category of risk. This risk is usually described to a patient or family by a genetic counselor or medical doctor with genetics expertise and refers to the likelihood that their family may carry a mutation for a genetic disease. Many participants in genetic counseling have not, themselves, been diagnosed with cancer. Genetic risk may also describe penetrance, that is, the likelihood that disease will be manifested in a particular individual once it has been established that they definitely have a genetic mutation for the disease. This type of risk is normally not discussed by mainstream clinicians and they clearly perceive communication about this type of risk as being the responsibility of a different set of experts such as those working for the Hereditary Cancer Program. Institutional Risk Finally, there appears to be a type of risk that is defined bureaucratically. I will refer to this as institutional risk. This risk is defined by incorporating elements of clinical, epidemiological, genetic and lived risk. This final type of risk takes into account potential legal ramifications of providing genetic services (in terms of risk management for the institution rather than the patient). This final type of risk may have direct implications for a patient. The determination of institutional risk also takes into account the available resources within the Cancer Agency and the health system as a whole (through an assessment of funding availability). They may be denied access to genetic testing because they do not meet the criteria for "high risk" that merit their participation in a genetic testing service. When determining institutionally defined risk, the HCP takes 85 on the role of advocate for resources within the BCCA, the Government health system and the private funding sector. Perceived risk also impacts the way in which institutional risk is defined. Members of the HCP discuss the impact of "not offering" a particular service to individuals, families or groups of at risk individuals. Institutionally defined risk is mapped out in the formal criteria for allowing individuals and families to access genetic services (testing and counseling). Ultimately, institutionally defined risk is spelled out in a letter that explains to patients and families whether they are considered at risk enough to meet the criteria to receive genetic testing. This type of risk is especially evident when the HCP establishes the confidence limits for results for BRCA1 and BRCA2 testing for families who are found to be in a "gray zone" with respect to their risk of having an as yet undiscovered genetic mutation for breast cancer. In some cases, an individual's personal assessment of risk appears to be based on a complex estimate that incorporates all these known types of risk. Most people interviewed in this study assessed their risk as high. Peoples' perception of risk may also be influenced by worries about external appraisals of their risk. For example, some individuals with strong family histories mentioned fear that even though they have not yet manifested a disease or been shown to carry a genetic mutation for HNPCC, their level of risk might be defined by insurance companies as high. In my examination of clinical, family and patient narratives it became clear that risk is heavily influenced by contextual and institutional factors. Risk is, in short, culturally constructed and it is created in subtly different ways by genetic counselors, clinicians, epidemiologists and families. 86 The GI Tumor Group The GI Tumor Group is part of the medical culture. This group showed me a set of observable symbolic arrangements with "an elaborate repertoire of designations and titles" (Geertz 1975: 32). It was a "theatre of status" (Geertz 1975: 33) and the participants played their roles according to a readily identifiable cultural script. There is a clear culture to the weekly case conference of the GI Tumor Group. When I was first introduced to the Group it was announced by the Chair of the GI Tumor Group that I would be observing indefinitely and that he spoke for all the participants in not only welcoming me but proclaiming their collective support for the advancement of medical science, to which my study would hopefully contribute. Each member wore a tie and many also wore white laboratory coats as well. Others wore nametags that designated their official status as a Cancer Agency employee. I modified my clothing accordingly from a sweater and slacks to a dress shirt and pants with a tie. I also requested an identification badge so that I would fit more seamlessly into the group. There was clear evidence of status differentiation amongst the different subgroups of participants in the GI Tumor Group. The GI Tumor Group had a number of distinct conventions: • An attending clinician presents (such as a GP) • Representatives from several groups: Surgeons, Radiation Oncologists, Medical Oncologists • Pathologist Role: Images: Slides (microscopic view of tissue samples and discussion of type, degree of cancer and amount of penetration to various body systems) • Radiologists Role: CT scans • Remarks from subspecialities: Medical Oncologists, Radiation Oncologists, Surgical Oncologists • Surgeons had the most cultural capital • The Chair Summarizes, guides and asks for input from each Clinical sector of the GI Tumor Group 87 The Surgeon seemed to have the most cultural capital of all the participants. If a surgeon was not present for one of the case conferences, then it was noted and in some instances conclusive recommendations for a particular case were deferred until representation from this group could be obtained. If a medical oncologist or radiation oncologist was not present then the meeting carried on without such postponements of decision making. The clinical culture is not homogenous and there are different zones of expertise. Their expertise existed in different parts of the clinical planet. Their language was understandable amongst their different cultures in the same way that Inuktitut is understood from Russia to Greenland across the Arctic Circle but only at a rudimentary level. The subtleties and more complex words were not immediately comprehended by all the participants. This became evident when members of one subspecialty would ask for clarification from another with regard to a presentation or analysis of a case . Therapeutic versus Healing Emplotment and the Ownership of Health Data In one case presented at the GI Tumor Group a clinician shared a number of clinical cases and image studies including CT scans, x-rays and slides but before opening the floor up for questions he noted that some key CT image studies were missing. He went on to describe how these were actually in the possession of the patient who had refused to return them to the hospital after she had been given them to carry to a specialist for a consultation. Apparently, the woman in question had decided that she owned the images since they were taken of her body and that she concluded that she 3 3 The power of technology was clearly present. The Case Conference makes use of multimedia image sharing equipment that has the capability to be linked to several sites throughout the province. This real time discussion of cases allows for interactive discussion and, most importantly, the asking of questions by the clinicians about image studies and the particular expertise of each consultant specialist. It showed that 88 would not allow them to be shown to anyone without her being present. The clinicians chuckled at the thought of a patient perceiving that the results of image studies could be owned by anyone besides an institution, in this case, a hospital. However, this clashing perspective between patient and doctor left a symbolic hole in the series of sophisticated images shown to the case conference. A clinical picture, typically undivided, was fragmented by this symbolic act of patient power. Entering the System as a Patient A patient is overloaded with a barrage of clinicians with which they interact. At least 12 different clinical experts will follow a single patient with colorectal cancer. The patient will have face to face interactions with most of these individuals. As part of their treatment experience, a patient with HNPCC may interact with the following medical professionals following their case: • A Medical Oncologist • A Radiation Oncologist • A Surgical Oncologist • A General Practitioner • A Gastroenterologist • A Variety of Nurses • A Genetic counselor • A Medical Geneticist • A Radiologist • A Pathologist If patients undergo genetic testing, then other clinicians will be added to their case including: • A Genetic Laboratory Technician • A Nurse Educator the interpretation of image studies was not black and white in the case of cancer. There was a great deal of expert interpretation about the meaning of the disease present, treatment options and prognosis. 89 The actual autonomy of the clinician is constrained by the institutional definition of their role. While theoretically the role of the oncologist may be autonomously defined by the profession in terms of a responsibility to treat patients living with cancer and not those at risk for cancer, it appears that their responsibilities are institutionally defined within carefully circumscribed limits. In actuality, the oncologists are organized into three groups: radiation oncologists, surgical oncologists and medical oncologists. Increased Specialization Institutions define the precise role of oncologists in interacting with patients. Essentially, surgical oncologists deal with surgery. Medical oncologists deal with chemotherapy. Radiation oncologists deal with radiation therapy. This is part of the local culture of oncology and is institutionally arranged accordingly at the BCCA: Interviewer: Just a, a few basic questions. What is the role of a radiation oncologist? Radiation Oncologist: [Pause] Uh, you've hit on a sore point. Huh. Having trained in Britain, I trained as an oncologist. Here, we've got a dichotomy between chemotherapy and radiotherapy for, uh, for no good reason, except it's what was done south of the border, I think. If I treat a patient with bowel cancer, um, uh, I have to be able to treat it knowing something of the disease and all the other treatment modalities. I mean, if I'm ignorant of what happens in the operation, then the radiation is not safe. Not... if I'm ignorant of the chemotherapy, the radiation's not safe. And it's the same the other way round. And I find it quite odd that I look after somebody with bowel cancer, and I send them down the corridor or, well, they'll have to wait for another appointment to see somebody else who's going to give them the chemotherapy. Um, I feel the hyper-specialization... I feel very strongly that the hyper-specialization is leading to being technicians. And, and I think it is to the detriment of the patient. Uh, I think there is a lot of, uh, important things, uh, because the, uh, there are several modalities of treatment. I mean, there is surgery, which has to be integrated with, um, other direct, uh, uh, anti-cancer treatments. Um, [throat clear] but, um, uh... and I, I think there is, uh, ample evidence that if you are a specialist, uh, uh, or you, your patient is treated at a special centre, that your outcome is better. Um, uh, I see a lot of problems here in trying to coordinate between two physicians in a centre where our cooperation 90 between radiation and, uh, chemotherapy is very good. Uh, I know of other centres where it, uh, can be disastrous. Um, so, a radiation oncologist treats cancer by, um, giving radiation and giving an opinion as to the, um, natural history and management of the disease. (Interview with a Radiation Oncologist, 8 June, 2000) This cultural ordering of the role of oncologists into specialized roles indicates a sore spot in the discipline, especially with respect to the continuity of care for the patient as they are compelled by the institutional arrangements to move patients from one stage along a theoretical continuum to another. Other clinicians also recognized the impact of changing institutional arrangements upon patient care: Interviewer: Um, what's your evaluation of that, relative to the old way it used to be done? Oncology Nurse: Um, I don't particularly like it. I don't like being split. You don't... the patients aren't split. You know, the patients get both radiation and chemotherapy. Um, and, and I, I, I feel that, um, um, I'm 1... I know chemotherapy, but I'm losing some of my knowl... Not... Hm. Well, some of my knowledge of radiation. Um, uh, I don't like, um, as well, basically the patients are, you know, if they're, if the patients are going to be having both treatments, they're not split into programs. So, why should their, their care be split into programs? You know, like, if they're on, if they're having a combination of chemotherapy and radiation, they'll see me for chemotherapy, and they'll see another nurse for radiation. Interviewer: So there's not as much continuity. Oncology Nurse: There isn't the continuity. Yeah. yeah. And, so, I don't, I don't think it's as good as it used to be. Interviewer: When did it change? Oncology Nurse: About, um, two, three years ago. (Interview with Oncology Nurse, 18 October, 2000) In fact, this continuum appears to be only theoretical in nature and patients sometimes may miss key pieces of information or segments of care along the way. 91 Perceptions of the Researcher It appeared that I was perceived by clinicians, patients and families as intertwined in (or at least related to) the clinical world. Families frequently asked about whether my research would impact the quality medical services or whether the research would result in the offering of genetic testing for HNPCC. Most people interviewed asked me to define medical anthropology. Some clinicians appeared to perceive my study as a clinical initiative. For the professionals, I discovered that there were two distinct though sometimes related cultures: the genetic and the medical (some individuals such as the participants in the HCP straddle both of these cultures). Sometimes, the HCP appears to provide the only bridge between the two cultures but most of the time they are separate, that is to say, most of the time people appear to be members of one or the other but not both. Like the Balinese described by Geertz (1975), the interviews with the professionals in my study did not allow me many opportunities to break through their unvarying construction of their public identity as medical professionals. When it did occur it appeared unnatural and uncomfortable and it was as though as Geertz describes, we had "happened upon each other's nakedness" (Geertz 1975: 34). Likewise the professionals appeared to be "contextualized persons" similar to those members of Morrocan society described by Geertz (1975). Their personhood, at least in the context of being interviewed by me, was very much defined by their institutional roles. Overall, I was surprisingly successful in acquiring interviews with clinicians. Given that their schedules were described as extremely busy, I was not anticipating being able to obtain relatively open access to their time for an interview. This availability of 92 clinicians was likely related to the generous support of a prestigious clinician who e-mailed each of the clinicians who I wanted to interview about my research. This may have contributed to my being perceived by clinicians, at least initially, as a member of the clinical culture. It appeared that the clinicians were not sure what to think of the research. It seemed unusual to them to be engaged in an open-ended interview where they were asked a series of what appeared to be non-clinical questions. One clinician, when asked about the interview, was unsure about the purpose of the interview. In short, they didn't appear to follow a scientific or medical pattern of research. As the research progressed, it became increasing clear that a monolithic institution of medicine does not exist. This is certainly the case in oncology. The field of oncology is comprised of a heterogeneous group of clinicians each with a distinct focus. The categories of oncology are not immutable. In Britain, for example, the medical oncologist role encompasses the responsibilities for both chemical and radiation therapy. In Canada, these are separate roles. There are clear cross-cultural differences in the cultures of oncology. In general, the clinicians were very good at describing HNPCC. So much so, that I began to become suspicious about whether they had reviewed HNPCC before I arrived via the Internet, Medline or the medical consultation database. In this regard, my study in some ways may have artificially raised the level of interest into HNPCC as an issue in the oncology community. It appears that the individuals who treat cancer have a very specific focus and that their roles are institutionally arranged. No one clinician appears to be responsible for 93 seeing the overall patient, with the possible exception of the general practitioner who is universally perceived by those interviewed as having the least and most inconsistent knowledge of genetic conditions. This raised some questions about the continuity of care for individual patients and their families. The institutional arrangement of tumor groups at the cancer agency further exacerbates the problem of narrow focus in cancer. Oncologists treat cancer tumors using different techniques based on their specialty. They deal with the patient when he or she arrives; they already have cancer. Their object is a disease, a cancerous growth, a bit of tissue that needs to be resected, radiated or chemically altered. HNPCC is a side issue, something to refer to another department, the Hereditary Cancer Program. Many of the oncologists see HNPCC as irrelevant to their interaction with the patient. The causality appears almost irrelevant in this clinical institutional world; the disease exists or it does not. Patents for Genetic Mutations In August of 2001, Myriad Technologies sent a letter to the Province of British Columbia Health Ministry and the BC Cancer Agency informing them that by providing genetic testing for the BRCA1 mutations they were in contravention of patent law (See Figure 5). Myriad Technologies, based in the United States, had patented the majority of the processes associated with genetic testing for the BRCA1 genetic mutation associated with the most common form of hereditary breast cancer. Letters were also sent by Myriad to the similar clinical and government bodies in Ontario and Alberta. The health ministry officials of the Provincial Government of British Columbia immediately complied with the request and ordered the BCCA to instruct the HCP to cease all testing 94 Figure 5: Myriad Technologies Ontario ignores patent,~pushes ahead with breast cancer test By APRIL LINDGREN and AMY O'BXIAN 'I lie Ontario government is defiantly foi glng ahead with a genetic-screening test Tor breast and ovarian cancer despite legal threats from an American company that says it has a patent on all aspects of the process. In this province, the B . C . Cancer Agency stopped performing the test in the fall of2001 after the ministry ofhcalth services said h couldn't afford to chal-lenge 11 i f {latent in court. Ontario's Health Minis ter Tony Clement announced Monday the province will ignore legal sabre raMBmj by Utah-based Myriad Genetics Inc. and spend $1.2 million on a sophisticated screening test for about 600 women omej the next nine months. "We have been threatened by this, com-pany with legal action for over a year now,' Clement told reporters. "Their claim is that they own the gene sequence relating in breast or ovarian cancer, and their 111:1-1 of view is that not only do we have to use their lest, but if wc use any other test that relates to (hat particular gene sequence for breast or ovarian can-cer, we've got to get their permission ami we've got to pay, basically, a royalty to litem. "Wc do not accept that claim and we are disregarding that claim. We will go to the highest court in the land on this." Clement added Myriad charges $3,850 per test while Ontario's procedure, which can be done mure quickly, custs $1,100. Ontario's stance m e a n s women in IIC. who arc deemed high risk and qualify for the test will have an option other than forking over nearly $4,000 to the Ameii-can company. This year, about 200 blood samples from B.C. will be sent to Ontario for the lest. B.C. Cancer Agency president Simon Sutcliffe said the agency will facilitate the testing, but is taking precaul ions to avoid breaching the Myriad patent. "We're going to advise the women that the test is available in Ontario, ttiat we can link them to the lab in Ontario, that we can facilitate how the blood gets there, bin we can't do the lest," Sutcliffe said. "We also wi l l not have the lab in Ontario give us the result of the test. We'll tell the Lib to giv<: il ilinvlly to the woman in question and the woman in question can then ask us what the interpretation means and what should be done with ft," Siilcliffc said that though the process is circuitous, it puts the onus on the woman instead of the agency, meaning the agency is not breaching the patent. The agency does not agree with the patent and would like to be able to do the ti'Miug here, hut Sutcliffe said it is willing to c o m p l y with the law until the matter is brought to court. "I Ihink H.C believes the law is the law. even though the law may not be correct, it is still a fault to break the law. Therefore you have to deal with this by changing the law. "1 Ihink the position that Ontario has taken is one of'We cannot be bound by lad law, therefore we'll break it."" Clement said If Myriad's comprehen-sive claim to patent protection for genes becomes the norm, it would have wide-ranging implications, including restric-tions on research and the develupment of tools to predict and ireat other genetic conditions. Researchers say 60 per cent of Canadians will experience diseases with some genetic component during their lifetime. Vancouver's Andrea Griffin is one of those people, and says Iter life was saved by the genetic test site had in which was paid for by the government. Griffin is outraged by Myriad's threats and its claims to exclusive rights to pn -pies' genes. "I think it's appalling. My genes belong to God. they don't belong to a private company," she said. -Would I like my daughter to have the right to that lest? flam straight. Our fam-ily has several members who carry the gene here and in Ontario. Some have developed cancer, some have not. In order for her to make a reasonable choice when she's older she needs that informa-tion." The test in be used in Ontario is con-sidered more than "5 percent accurate in predicting whether women with family histories of breast or ovarian cancer have a genetic mutation that increases their risk of developing the diseases. Stulhiim Nrmami V.mnivvir Salt Setting it straight litis is the list of winners of the I'.trvasi Bharatiya Samnwii Award, which honours] Indians abroad: Ujjal DosaniK former premier of KiU Sir Anerood Jugnauth. prime minister of Mauritius; Sir S.S. Ramphal. former sec-retary-general of the Commonwealth; Professor Fatima Meer, associate of Kel-son Mandela of South Africa; Dato Sen S. Samy Vetlu, cabinet minister of Malaysia.* Lord N a v i i i i ltholakia, a member of Par-liament in the United Kingdom; Dr. Hari N. H.iriSi . of Hong Kong, Kanaksi G. Kl.0r.1i of Oman. Dr. Manilal Premchand Chandat ia of Kenva and Kajal Gupta of the U.S. 95 for hereditary breast cancer. Alberta and Ontario did not. In what seemed like an instant, the legal interpretation of patent law and the wider business world shot a bolt into the HCP and the lives of the families served by the program. The Impact of the Pharmaceutical Industry on Local Support No support group exists for HNPCC families. Similarly, no support group exists in British Columbia for patients and families who have experienced sporadic colon cancer. While there is a national colon cancer support program, its base is in Toronto and does not adequately reach the patients in the local area. The national support group, complete with a web site and executive director, does not have any perceivable local presence for patients and families and it will not endorse an independent local group. It has regional representatives from each province and is influenced largely by the pharmaceutical company that funds the support initiative. This company sells medication for colorectal cancer and has a local delegate for the British Columbia region. This delegate told a small group of patients who were trying to set-up their own support group that a local support group was unnecessary and unwise because it compromised the strength of a national voice for colon cancer patients. This national voice is centred in Toronto at the Drug Company-funded support association head office. As well, after providing funding for the set-up of a national association for survivors of colon cancer, the company told the participants that they were not allowed to accept donations of any kind from any rival pharmaceutical companies. This essentially creates a monopoly across Canada for patient support groups by this particular company. The company also requested that they be able to advertise their chemotherapy medication for treating colon cancer in the pamphlets, brochures and informational materials for people 96 diagnosed with colon cancer. After considerable discussion and debate with the company representatives, the participants in the national support group were successful in denying this request. The logo for the sponsor company remains on the back of the information pamphlet. I attempted to assist people diagnosed with colon cancer with the set-up of a local support group but the national representative who wished to support the vision of the national association actively discouraged this process. This representative was also the clinician for a number of the participants in this fledgling support group. As the national representative for the colon cancer association, she flew to Ontario a few times each year and met with the national participants. Her interest was to share information about the goals and activities of the national group in information sessions with BC patients but she discouraged any attempt by these patients to set up an active or independent local group (in terms of funding or goals). The group ceased to meet after four meetings. Support groups are not "natural" outcomes of all illness experiences. They become or are made "natural". One of the central organizing principles of a support group is the creation of what Bourdieu (1995) has called an emblem (the opposite of a stigma). One way that a support group is consecrated is to have it anointed by a spokesperson who possesses a significant amount of symbolic capital (such as a famous person): "The act of social magic which consists in trying to bring into existence the thing named [in this case a support group] may succeed if the person who performs it is capable of gaining recognition through his speech for the power which that speech is appropriating for itself by a provisional or definitive upsurption, that of imposing a new vision and a new limit on the social world... to consecrate a new limit" (Bourdieu 1995: 223). This is why individuals with HNPCC and the fledgling support group members recognized the need for a 'famous spokesperson' for the 'movement'. They wanted to transfer the symbolic capital of a well-known figure onto the socially devalued person affected by colon cancer. Someone with a significant amount of symbolic capital could either launch the support group by magically changing stigmata into an emblem. A number of people affected by HNPCC made reference to figures with a lot of symbolic capital such as Pamela Wallen or Katie Couric, either of whom might come to exemplify the cultural messiah for colon cancer: Figure 6: News Article on Katie Couric and Pamela Wallin Find out more ibeal your risk. prtwnUon. deltctim It's the second-deadliest cancer. Caught early it's 90% curable. Good Housekeeping h e a l t h & b e a u t y Family Health Conquering Colon Cancer 98 Health News Pamela Wallin taping pay-TV show on cancer TORONTO — Pamela Wallui is _ taping a television speaal to raise awareness about colorectal cancer, the second leading cause of cancer tle.ilh in North America, 'Don't be air aid to upfront about wlutt's tfolng on below your waist," says Wallin. who had surgery last yeai lor colorectal cancer. Unless You Ask win air next Tuesday on Vu!. Rell Express Vu Satellite's pav-oer-vlw se;v:re WALLIN Like changing water into wine, a famous person could transform colon cancer disease into a cause worthy of supporting. It is an example of cultural alchemy to create a support group by turning the stigma associated with HNPCC into a set of emblems. In a support group, individuals with HNPCC have a lowered symbolic capital that they are engaged in a struggle over classification: "... struggles over classifications, struggles over monopoly of the power to make people see and believe, to get them to know and recognize, to impose the legitimate definition of the divisions of the social world and, thereby, to make and unmake groups. What is at stake here is the power of imposing a vision of the social world through principles of division which, when they are imposed on a whole group, establish meaning and a consensus about meaning, and in particular about the identity and unity of the group, which creates the reality of the unity and the identity of the group" (Bourdieu 1995: 221). The power to unmake and make support groups is one that exists within the institutional structure of the medical field. Either the B C Cancer Agency itself or a large 99 pharmaceutical company has the power to approve the creation of a support group. A support group appears unable to survive without the sanction from legitimate sources of cultural power. Differing Time Horizons, Expectations, Strategies and Accountability: Research Studies versus Clinical Services During one of the monthly HCP case conferences, the issue of time lines for reporting back to families was discussed. In particular, two cases were reviewed where families waited for a number of years before receiving results from the HCP. In one case, a family at risk for HNPCC waited for over four years before receiving results from Ontario regarding their genetic testing. The HCP was the referring agency to the Ontario program. Ironically, in the course of the four-year wait, the Ontario Hereditary Cancer program sent the family a questionnaire surveying their satisfaction with the services that they had received. No doubt this questionnaire was generated automatically and sent to the family following a set time period after their initial referral. In another case, a woman was referred to the HCP in December of 1996. The results of her genetic testing were presented nearly six years later to the HCP case conference in March of 2002. When the issue of prolonged time lines was discussed at the HCP, it was suggested that perhaps families might not understand the limitations of research initiatives in providing timely results. The interviews completed in this study suggest that families do not fully understand the difference between a research initiative and a clinical intervention with respect to expectations for timeliness of outcomes. Families appeared to perceive the HCP, regardless of how it is funded or cast internally, as a service. Certainly, family members did not appear to have re-adjusted their expectations with regard to the timeliness of correspondence and results from the HCP as part of an 100 understanding that research is expected to be dramatically slower than medicine. In contrast, the family's expectations of the HCP appear the same as those for a clinical service; they do not appear to give the program more leniency due to its official status as a research initiative in terms of their expectations for prompt communications, responses and results. This is understandable given that in early discussions of the HCP, it was not clear that the clinicians themselves actually perceived the program as primarily research. The HCP, in practice, has the appearance of a clinical service and is discussed by the stakeholders in program in relation to appropriate standards of care and medical outcomes for patients and families. At the very least, it is medically related and an integral part of the decision-making process for clinicians who present cases there. In some ways, the decision to offer genetics counseling and testing as research appears to be more strategic than substantive, especially as the HCP gained more of a profile amongst referring clinicians, an increasingly large "caseload" of families and status as a program. The HCP is in many respects implemented on a day to day basis in a similar fashion to a clinical service rather than a research study. While rigorous research and evaluation is an indivisible part of the HCP, its official placement under the rubric of research appears to be in many ways an issue of a funding and political strategy. Families and clinicians appear to share a vision of research as a means to achieving a potentially clinically efficacious end, much like a clinical trial for a medication that might show some curative promise. Observations of the discussions at the HCP made it apparent that clinical and research initiatives have different timelines and levels of accountability to their 101 participants. In essence, researchers appear to have less accountability to participants in studies than do the clinicians to patients receiving medical services. In research, the research objectives are at the root of the program whereas in medical service the patient's interest is at the core of the agenda. This difference in focus flows into an evaluation of what is considered to be an acceptable timeline in the research and the clinical culture. The HCP, as a research program, appears able to stretch out its timeline for delivery of its outcomes (e.g. an appointment for genetics counseling, genetics test results or correspondence with a participant) much farther than a clinical timeline would allow. In the medical realm, a wait of four to six years for a result would not be as readily explainable to the participants (patients). Researchers do not appear as accountable to the participants in a study as clinicians would be to patients receiving medical care. The second case discussed at the monthly case conference also brought into the discussion the possibility of genetic testing of children. While this was an issue previously encountered at the HCP, this recent discussion provided an opportunity to observe the authority of the medical narrative. In the case reviewed, the possibility of offering genetic testing for two children at risk for a mutation for a rare cancer was discussed. The potential benefit was described as providing one or both of the children with a negative result that would thereby liberate them from invasive clinical surveillance regimes. It was agreed that early diagnosis and surgery was the only treatment for this disease. A number of strategies for enhanced clinical surveillance were discussed including: PET Scan, MRI, spiral CT Scan and surveillance by a thorough general practitioner. 102 In the course of the discussion, a bio-ethicist suggested that there were possible negative outcomes as well that included stigmatizing behaviour from the parents towards one of the children if they were found to be positive and the other negative for the genetic mutation. A medical doctor interjected at this point in the discussion and stated that they were aware of studies that showed that siblings who were given a negative result alongside a sibling who received a positive result were susceptible to feelings of guilt. A genetic counselor noted that these would be issues discussed at length with the family in question. A nurse practitioner noted that genetic testing is performed in children at risk forFAP. A senior pathologist noted that the mission statement for the program contained a provision for the possibility of genetic testing of children. The bio-ethicist countered that the medical benefits did not clearly outweigh the potential negative effects of providing genetic testing to children and cautioned that the issues needed to be examined more carefully before proceeding. A medical doctor then asserted that the disease was potentially a lethal one, that it could be prevented and that "he was not going to apologize for taking a medical perspective in this situation". The medical doctor played the medical field's "trump" card in the discussion, that is, to prevent death, by detecting and removing a deadly sarcoma. The heightened cultural capital that is held by the medical doctor was made clear in this situation. The medical doctors have more cultural capital than the other practitioners present (counselors, ethicists, social scientists, nurses) and the ability to prevent death garners them additional symbolic capital. The senior pathologist then brought in a narrative that highlighted the economic climate of health care service today by stating that the health care system could not afford to recommend imaging for 103 both of the children in this family if it were unnecessary. CT scans, he concluded, were an unnecessary cost to the system if you could eliminate [potentially] the need for them by genetically testing the children. Here the clinician employed an administrative narrative to take on the role of the careful steward of the health care system. The bio-ethicist's perspective was silenced, and the discussion ended. Interestingly, the genetic testing does not detect or remove the deadly sarcoma. It is the clinical surveillance (serial PT scan, MRI, spiral CT scan, careful observation by the GP) and intervention that could save the lives of the children, not the genetic testing. The genetic testing provides the possibility for one or both of the children to avoid the clinical surveillance. Here, it appeared as though the medical and genetic cultures commingled into a confusing mixture of narratives. An unpublished research study was reviewed at the HCP in June of 2000. It examined the understandings of participants in counseling sessions regarding uninformative genetic test results. The original purpose of testing in this situation is to find a genetic mutation, but sometimes one is not found. This does not mean that one does not exist but instead means that the test was unable to locate one. These test results are scientifically uninformative in that they do not locate a genetic mutation for a hereditary cancer. Conversely, they do not indicate that one does not exist. These results do not entirely rule out a genetic cause of the family's cancer nor do they comment on the family's risk for sporadic cancer. It appeared in the findings of this questionnaire-based study that individuals receiving uninformative results sometimes interpreted them incorrectly to mean that they had received some reassurance that they were not at risk for genetic cancer. These individuals in many cases went on to spread information 104 throughout their family that was based on their incorrect interpretation (scientifically and clinically) of their result. The potential widespread distribution of incorrectly interpreted information from a genetics service was a cause for major concern for the participants of the HCP. The lead investigator for the study highlighted a number of concerns about the accuracy of the interpretations by participants in genetics counseling sessions. She made several suggestions for tools that might help increase the accuracy of the participant's interpretations of information sessions with genetic counselors including the use of: • Videos • Pamphlets • A clearly written letter for the participant about what the results really mean scientifically • A clearly written letter to family members about what the results really mean scientifically about their risk • Face to face discussion of uninformative results with the individual who underwent the testing rather than telephone reports • Face to face discussion with family members about uninformative results. The presentation of this study and the discussion that surrounded it highlights the difference between the meaning of genetics counseling for professionals and families. The interviews in my study suggest an alternative interpretation. Rather than misunderstanding uninformative results, people affected by hereditary cancer are sophisticated in their understanding of their disease and its risks. However, while the primary purpose of a genetics counseling session for the professional is to provide a scientifically accurate risk assessment, many family members come for entirely different purposes. They already know that their risk is high or they would not be there. The reason that they come to the session is to seek an authority that might help them in their attempt to colonize their future risk of cancer and to enhance the strength of the 105 protective cocoon of their person and family in the process. Ultimately, they want to lower their sense of risk so that they can overcome the fateful moments of genetic susceptibility to disease and avoid being engulfed by powerlessness so that they can go on with life. Uncertain results help with this attempt to secure a bit of certainty and hope to the mantle of their trust system that is threatened by cancer. Ironically, both families and genetic counselors share a common goal: the processing of risk but one uses science while the other uses healing emplotment. Uninformative results are useful and they are used by individuals to heal by providing emotional inoculations and to create hope that risk can be overcome in families. No amount of reconfiguring the science or methods for communication will address the fact that they are at cross-purposes and their different understandings about healing are like two ships passing one another silently in the night. The HCP draws on the perspectives of many disciplines including pathologists, medical anthropologists, bio-ethicists, various oncologists, genetic counselors and nurse educators and is, theoretically, constructed by blending the cultures of both medicine and genetics. For the most part, the discussion at the HCP is a busy intersection of narratives from this diverse group of disciplines but during critical times of decision-making two viewpoints emerge with the most cultural capital: the medical and the administrative. The rich exchange of ideas at the HCP is like a microscope with a series of lens: clinical lens, genetics lens, administrative lens and social scientific lens that are put in place to observe the issues on the hereditary cancer slide. However, the most powerful lens is the medical one, with the administrative lens a close second and when they are slipped over the slide all other lenses are blurred. 106 This chapter has attempted to illustrate some key areas of the institutional and healthcare landscape that shape the experience of clinicians and patients. A working definition of institution was developed and a new type of risk, institutional risk, was introduced. Institutional risk has particular importance for families with hereditary cancer and the Hereditary Cancer Program in terms of its allocation of resources. Other impacts of institutional structure, such as the existence of tumor groups and the alignment of genetics services under the rubric of research have led to difficulties in continuity of service in addition to problems of resource allocation. For patients, these represent more fundamental problems pertaining to access to services that they feel are important. In some ways, genetic susceptibility to illness had become a commodity as was illustrated by the examples of Myriad technologies stopping genetic testing and the intrusion of the pharmaceutical industry into the support group for colorectal cancer. Finally, the chapter ends with an example of the immense symbolic capital of clinical practice in the HCP. A further aim of this section has been to show the institutional consecration of medical and genetic explanatory models about disease, illness and sickness with lay perspectives occupying a subordinate position in this epistemological social hierarchy. Furthermore, lay understandings are often seen as a territory that requires colonization by medical and genetic understandings. These mysterious and murky lay perspectives are the focus of the next chapter. 107 CHAPTER FOUR: INTRODUCTION TO PATIENT AND FAMILY NARRATIVES This chapter begins to present the texture for this study by introducing the narratives of family members at risk for HNPCC. This section provides some ethnographic data for the investigation and, in particular, offers a glimpse into what have been categorized earlier by various authors as lay perspectives. These lay perspectives have been largely ignored in research to date and few studies exist that provide data describing them. This chapter begins to provide some actual data on lay perspectives by drawing on interviews with family members at risk for HNPCC about their understandings of illness, disease and sickness. This part of the dissertation includes a description of the experience of interviewing people with cancer as well as a discussion of how the interviewer was perceived. The narratives themselves offer a complex analysis by family members of the knowledge base of professionals, treatment, prophylactic surgery, public ideas about cancer, perceptions of colon cancer as a male disease, the meaning of counseling and the risks associated with genetic testing (e.g. loss of insurance or mortgage). These interviews point to the peaceful co-existence of lay perspectives, medical knowledge and genetics and they begin to cast doubt on the aptness of the term 'lay perspective'. The narratives show a deep reflexivity as people knowingly confront the fateful moments brought about by HNPCC such as the possibility of death as they work to develop approaches that will bring about a sense of emotional inoculation. 108 Background Given that I had not yet obtained written consent for the interviews until I met the participants face to face, I did not usually know much about them except that their family was likely to have a mutation for HNPCC. Often, I did not know whether an interview subject had had direct experience with cancer or if they were family members of people who had experienced HNPCC. I did not ask for background information from the referral source, usually a genetic counselor, before commencing the information. I wanted to interview people in person and to let the interview unfold unfettered by too many of my own prior expectations. As a result, the precise experience of the interview participant was a surprise for me. The participants were the stewards of their family's experience and their narrative. This meant that sometimes I would meet patients, sometimes spouses (of people at risk or affected), sometimes people at risk and sometimes other family members. Each interview initially began as some mystery about the connection of the participant to cancer. I found out about the person and how they defined themselves before their experience was revealed in due course. Once the initial contact was made to a potential participant, the participant themselves decided whether they would connect me with further family members. Beyond the first referral from a genetic counselor, it was the participants, therefore, who were the gatekeepers for both information and additional interviews in their families. Many of the families that I interviewed had had devastating and tragic experiences with cancer. One family in particular had lost their father and a sister to cancer and three of the six daughters in the family have been diagnosed with colon cancer. As I first arrived for the interview I was unexpectedly met with a large 109 contingent of the family and friends who were all assembled together in the room. Some had come to participate while others were there to observe and to provide support. Earlier in the day I had interviewed one of the sisters who had also experienced cancer in another town. I interviewed this family with three generations present in the room in addition to a spouse and a family friend as well as a niece and her boyfriend. The entire family sat in a semi-circle around the kitchen table with the husband of the first participant sitting on the counter as a part-time participant in the interview. Each person was interviewed one at a time. I focussed on one person's narrative but from time to time another person in the room would participate directly. However, overall, the group observed one person's priority at a time while I asked questions and they shared their individual perspectives. The first of the participants, Roberta, was the youngest of six daughters. At the time of the interview she was 34 years of age and she had two children of her own. Her father was diagnosed with colon and lung cancer and given eight months to live when he was forty-seven. He died when she had one month left to her eleventh birthday. Early in March nine years ago (1993) she discovered that she also had colon cancer. At that time, she was 25 years old and she believes that she may have been the youngest case of hereditary nonpolyposis colorectal cancer in British Columbia. Her children were three and six years old at the time and it was very difficult for them. Her youngest daughter at that time was having a recurring dream where each night she saw an angel over her mother. One day, she announced to her mother shortly before the discovery of the cancer that "mommy was going to die". Since that time, her daughter has continued to experience worries about her mother's fate. Today, after having had surgery, Roberta's 110 bowels have never been the same. Each year she has blood work and a colonoscopy but life has become scary as she worries about every little pain that it may signal the return of cancer. Her daughter has since quit having the dream about the angel and so Roberta is reassured about death for the time being. One year after Roberta's diagnosis, her sister Margaret was diagnosed with colon cancer in 1994. In 1999, on the 13 of December, Roberta's sister Brigette died of colon cancer. Roberta has coped by using lots of laughter and talking with the whole family about the experience. She has told absolutely everyone she knows and does not keep her experience a secret. As I began to interview the mother of this family, unease overcame the room. Clearly, this woman had lost a lot as she had seen her husband and three of her daughters struck by colon cancer. She was nervous about being interviewed as she began to talk about her experience with cancer in her family. She lost her husband twenty-four years ago when he was 47 years of age. Her youngest daughter Roberta was the first to experience colorectal cancer after the husband and then one-year later her daughter Margaret was struck with colorectal cancer. Her daughter Brigette died of colon cancer in 1999. She spoke proudly of her family as she described all her daughters but as she tried to summarize the impact of cancer on her family she became overwhelmed with emotion. As she sobbed painfully her daughter Roberta stood behind her and rubbed her shoulder and I turned off the tape. There was an uncomfortable moment as the tragedy of the family's experiences weighed on the moment and although my inclination was to try to say something soothing I said nothing. Suddenly, the good friend of the mom who had been observing the interaction between the researcher and the family says: "Look at him, he's sitting there all naively and he just doesn't know a thing about who he's I l l interviewing". At this moment, I thought that I was about to be held accountable, and perhaps rightfully so, for intruding into the lifeworld of these people who have paid so dearly and experienced so much tragedy. I felt as though I had somehow opened up old wounds filled with so much pain that perhaps no one should have dared mention the experiences, never mind ask for the entire account. The justification for the research project seemed colorless for a moment and I looked down at my feet as sadness overcame us all. But, much to my surprised relief, the friend continued on in a different direction altogether and finished her point with a brilliant rescue: "he knows absolutely nothing about the incredible sex life of this woman and her daughters; it's their sex life that I think might have some type of genetic mutation and what I'd really like to have them tell us about". The mom exclaimed over her tears: "what can I say, I'm hot blooded; so are my daughters. It's what drew my husband and I together in the first place". Everyone in the room laughed uncontrollably and I revealed my true purpose, that I'd actually been sent by the cancer agency in order to investigate the genetic roots of their extraordinary sex life. The mom went on to portray herself as more than the victim of tragedy and her family as more than people who had experienced illness. She was an oil painter, a world traveler, a camper, a caregiver, a woman who had proudly raised six children on her own and she was a hot-blooded lover. She was well aware of threats to her protective cocoon and her family by societal ideas about cancer, death and tragedy. She would not let herself be defined by a disease and this was part of her healing narrative. The initial part of the interviews attempted to take a 'snapshot' about the participants' background: their education, their work experience, their health status, their 112 family and, in general, attempted to derive a sense of how the person defined themselves. One of the first questions that I always asked the participants, whether they were patients, family members or clinicians, was: 'tell me about yourself. This gave people an opportunity to define themselves from their point of view. Often, I followed with more specific rapport-building questions and societally defining variables such as: what do you do, what is a typical week like for you, do you have brothers and sisters, etc. In virtually every interview, this line of questioning never precipitated a comment from people with respect to cancer. Even though people knew that the focus of my research was on their experience with cancer, most of the people interviewed for this study never mentioned cancer until I mentioned it. Perceptions of the Researcher As a rule, it appeared that most people interviewed tended to see the clinicians as all part of the same clinical world whether they were genetic counselors, surgeons, oncologists or medical doctors. The participants also appeared, at least initially, to invest the same level of cultural capital in me as they would in professionals from the clinical and genetic world. Most people interviewed were very supportive of genetic testing and some people even looked to my study as a potential mechanism for advocating for genetic testing for HNPCC. Generally, people appeared to enjoy telling me about their experiences. The following is an excerpt from an interview with a person who had not experienced HNPCC but was at risk for it and asked me directly whether my research would help to establish genetic testing in BC: At Risk Female: So I'm hoping, I'm hoping, um ... I guess that's the only thing you can do at this time [for local genetic testing]. As far as another emotion or another experience or another whatever, I'm hoping that, uh, the BC Can, uh, the BC Cancer Agency gets a lab or something here in British Columbia soon. Uh, 113 the research that you're doing, okay, finding out from family members, how does it affect them? What are their feelings? Um, how do they feel about having it, how do they feel about not having it, uh, and, and, you know, how does it affect? What do you see? What do you feel? What do you hear? Um. That's ... it's, it would be nice to see something like that on paper. It would be nicer to be able to read that on the Internet for what cancer research is doing. Um. Because you don't always read that. What you do read on the cancer research a lot of times, or what I have read, anyway, is basically, uh, their latest study. Uh, sure, the latest study is nice. (Interview with At Risk Female, 20 July, 2001) Many of the family members interviewed hoped that my research would help to establish genetic testing and many reported that their motivation for participating in the study was to improve the system of services available (health and genetic) to people at risk for the disease. This social conscience regarding improving the community of people affected by cancer appeared to offer some evidence for the existence of an orientation towards the life politics described in Chapter Two (Giddens 1997). Overall, people appeared to be quite comfortable in telling me about their experiences. The following example illustrates that some individuals were even comfortable telling me things that they might not tell others: Interviewer: Yeah. Do you tell friends, or [about HNPCC]? At Risk Female: Um, not... well, it's not something that's in the forefront of my conversation, that's for sure. But I... there are some friends that know of my family history. Uh, people that I've known forever and a day. Sort of thing. But, uh, there's lots of friends that don't, that don't know. I mean, sort of, my friends that know about my, my dad, would, you know, would have know that he had been in for cancer surgery, sort of idea. But, uh, there's lots of my friends that don't, don't have, uh, any idea. And none of my friends know about my, um, problem with the [specific health difficulty]. The [specific health difficulty]. My husband doesn't know, either. I haven't told him that. I mean, he would be worried sick, constantly. So, there's no point in telling him unless it actually happens. (Interview with At Risk Female, 2000) 114 She did not want to needlessly introduce a fateful moment into her husband's practical consciousness and threaten the integrity of his emotional inoculation. This ease of sharing information with me was likely due to the fact that I was removed from their immediate social group and that my study protected their anonymity. In a number of instances, people became emotional and in others it appeared that the study provided a forum for open discussion and thought about HNPCC that did not exist elsewhere in the lives of the participants. Describing Cancer in the Illness Narratives Before interviewing people with cancer I had been told by many people that the interviews were likely to be very emotionally exhausting due to their gloomy and tragic subject matter. Before asking people questions about their cancer experience that really 'reached the heart of the matter' I was somehow imagining that I would be lowered into a frightful and shadowy narrative world. In fact, this was almost never the case at all. Instead, whenever I asked the question "can you tell me about your experiences with cancer", I was treated to a feast of insights, humor and a generous sharing of people's vitality and philosophy of life. Consider the following interaction: Interviewer: Can you tell me about your experiences with cancer? Affected Male: Well, the way ... because the reason.. the doctor, like you said, my father had had grandmother had colon cancer in her early seventies. And then my father, about four years ago? Also got diagnosed with colon cancer. And had kind of almost an emergency surgery. I mean, he had a big growth that, uh, um... he was, what, getting anaemic, and he was bleeding inside, and they found a tumor, and they, they took it out. So [wife] said, "Well, at your age, late forties, you know, with your history, you should get examined." So I went to my GP. He said, "Oh it's not a bad idea." He referred me to a gastroenterologist who said, "We'll do it, though even with your family history, you're not at a high risk." Which I've subsequently learned actually isn't true, from the geneticist here. Um, I'm evidently fifty percent predisposed to cancer. Um, coming from 115 my grandmother's side, according to [name of medical practitioner], who is the geneticist at VGH. So, um, so I went for the test and they found a polyp. And, uh, it was, it was flat, or something, so he couldn't remove it. Apparently because he was afraid to perforate, uh, the lining. So he took a biopsy and then, um, [wife] called as if she was my doctor, saying she wanted the results of this patient [chuckle]. So when I walked in the day, the door one day, she had this look on her face, saying, "It was malignant." Right? So, um, so it had to come out. In, right, there's um... So, it, it was a little unreal. [Wife] was more upset than I was. In a way, more concerned than I was, I think. I mean, I'm sure of it. I mean, the whole thing was a bit unreal to me. And, um, I got in, I think fairly quickly, in terms of, nine, ten days or something. From the time they found out till the time they did the surgery. And, so I had the cancer. And to be honest, I found being sick like a vacation. You know. I mean, it was, it was, you know, you got to lay in the bed and you didn't have to worry about what was happening in the market, and you didn't have to clean the gutters, and, uh ... [background chuckling of spouse] ... worry about anything. Your life became reduced to that moment, and the post-op discomfort, and, you know, relieving the pain, and can I sit up by myself, and, you know, when am I going to be able to go to the bathroom, and, just... I mean, it was just... kind of quieted down. And in a way, it was a holiday. You know. [Chuckle] I mean, I'm... Interviewer: Mm hm. Affected Male: And it was interesting. Because, um, the surgeon I had was a, really a [... ] here. And he said, uh, he recommended this book, "Love, Medicine and Miracles," Bernie Siegel. And I know the name. You know, he used to be on the pop shows. It was a best seller. Are you familiar with it? Interviewer: I haven't read the book. Affected Male: So he recommended, "It's maybe something you want to think about reading." So, anyway, I read some of it. And, uh, one part was, uh, where, in ... Siegel's a traditionally trained surgeon from Yale Medical school, and, uh, then he became kind of mind body, and dot dot dot. But, um, he said in his experience, about fifteen percent of the people, when they get a diagnosis of cancer, kind of feel a sense of relief. Because they think they're going to die, and they won't have to hassle life anymore. And I had a little flavour of that, you know. I thought, well, you know, I mean, I wasn't scared. Um, I thought, well, if it doesn't work out, I don't have to worry about what the market's doing. I don't have to think about retirement, or, or I'm tired. It's like a rest, you know? I mean, uh, there's a up side to it. [Chuckle] And I, I was obviously ... Interviewer: [Laugh] 116 Affected Male: ... it's just kind of stupid, you know, but, um, you know, I thought, if it wasn't for [wife], I mean, we don't have kids, um, that was, you know, that was okay. You know. And I, and I quite honestly realized, I'm not afraid of dying, I'm afraid of being broke. And I joked about this with a parent at school, in September. And it was in May that I'd had the surgery. And he laughed, and said, "Me too." And then it turned out he went broke. And he, he blew his brains out in January. So. He meant it. Um. [Laugh] Interviewer: Mm hm. Affected Male: I mean, he really meant it. You know. Um, but I realized that's actually, I'm more in control of my life. Of, you know, planning for retirement and doing that than the fear of, you know, I may not make it out of the surgery. It may, you know, I mean. But I, I liked the experience. I liked it, um, well, because otherwise, I'm, I was at peace... [emphasis added] (Interview with Affected Male, 11 December, 2000) The subject describes cancer as a holiday and he notes that it has an upside. The statement that he used to fear being broke rather than death shows how before he was diagnosed with cancer he had valued material capital over death itself. The couple consciously confronted this concern and reconfigured the social value of emotional capital so that it was more precious than material capital. His spouse was a physician who gave up her practice while he continued to work so that they could focus more on a pure relationship. They changed the themes of their autobiographical narratives by seeking emotional capital from a pure relationship. Rather than feeling drained or consumed by dread, I often found myself leaving my interviews feeling inspired and excited about peoples' insights about their experiences. The families interviewed all had enormous experience with cancer. They had all lost relatives to HNPCC and many had lost close relatives such as parents, siblings or children to the disease. The following interview extract illustrates this point: Interviewer: Can you tell me about your experience, uh, your family's experience with cancer? 117 At Risk Female: [Sigh] Well, um, the first person that we know that had cancer was my grandmother. And she had, um, surgery in Victoria. And she had, um, I think it was a gall bladder operation, at the time. When they discovered the bowel cancer. And she, uh... it metastasized. It was, it was, uh, a little bit late when they discovered it. And it had metasta, metastasized to her bones and to her brain. And she died when she was seventy-seven. My, uh, dad. No, not my dad. My uncle was next. And he got the cancer when he was about forty-eight. And he had radical, um, surgery where they remove the whole, the whole bowel and given them a colostomy, and everything. And he died when he was fifty. Now, that would have been about [pause] mm, twenty-seven years ago. Hm, what year is that? '77? Interviewer: Yes. At Risk Female: Twenty, yeah. Twenty-seven? No, twen,'73. Interviewer: '73. Yeah. At Risk Female: Yeah. Um, so he died, and then my dad got cancer. Now, he's eighty-five now. Still alive. My mom and dad are both still alive. And he got it about fifteen years ago, so he would have been ab, about age seventy. I'm ... now, this is, would be give or take a few years, because I'm not sure of the exact year. And he got the bowel cancer, and had just not, not a colostomy or anything, he just had a resection. Of the surgery. Or, of the, uh, cancer. And he is, he didn't have any, uh, chemotherapy, or any radiation. Which surprised me. And he's, he's living today. My ... his other brother, about, approximately the same time, contracted cancer. And had the same surgery. I don't know if he had, um, chemotherapy or radiation. I don't know. He lives in Edmonton. And, uh, he's still alive too. (Interview with At Risk Female, 13 December, 2000) Later in the interview, this individual disclosed that her former husband had a sister who died of colon cancer at age 36 and that this dramatically elevated her daughter's risk of HNPCC. People talked about it quite openly and were capable of listing off all the relatives who had experienced cancer, the age of onset, specific manifestation, treatment and outcome. All the families interviewed are very experienced with cancer, and firmly believe that their cancer is inherited and already have an elevated sense of their risk for HNPCC before they ever encountered clinicians or genetic counselors. Most people are 118 not looking for information about their risk status when they visit professionals; they are looking ways to fortify the cocoon that protects their person so that they can go on with the business of everyday life. Threats to Emotional Inoculation and Prophylactic Surgery The clinical literature reviewed in the introductory chapter suggests that one of the issues associated with HNPCC is whether or not to perform prophylactic surgery. In fact, although this is a frequent concern for people with respect to FAP, discussion of its possibility does not appear to be a part of the clinical culture in British Columbia. When clinicians were asked about their perspective on this intervention, it seemed as though this was the first time that many of the oncologists had ever considered this issue. The sparse knowledge that oncologists have about HNPCC may be the underlying point here. Given that it appears that most clinicians do not distinguish between sporadic and hereditary colorectal cancer, it follows that they would not consider prophylactic surgery in HNPCC given that they would not consider it to prevent sporadic colon cancer. In contrast, families at risk for HNPCC do think about prophylactic surgery. In fact, their examination of surgery in general is very complex. For example, one person at risk for HNPCC noted that if she were to be diagnosed with colon cancer she would not only have to decide whether to remove the cancerous tissue but she would also have to consider the amount of the actual tissue to remove. This is balanced off with a desire to avoid a colostomy, that is, how much to remove to maximize the cancer treatment but to avoid the stigma of a colostomy. When faced with removing some of the intestine, at risk family members wondered: do you instruct the surgeon to remove more of the intestine than the part that actually has growths on it or do you have more removed as a 119 prophylactic measure? This was one of many instances where family members appeared to be ahead of clinicians in terms of knowledge about HNPCC even though the medical practitioner would have significantly more cultural capital. The family members interviewed were proactive with respect to their agenda in genetics counseling. Consider the following example where an at risk individual raised questions about her childre