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Research in human genetics : promise, pitfalls and policy challenges Baird, Patricia A. Feb 28, 1995

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RESEARCH IN HUMAN GENETICS:PROMISE, PITFALLS AND POLICY CHALLENGESPatricia Baird, M.D., C.M., FRCPC.,FCCMG.HPRU 95:30 February 1995RESEARCH IN HUMAN GENETICS:PROMISE, PITFALLS AND POLICY CHALLENGESPatricia Baird, M.D., C.M., FRCPC.,FCCMG.HPRU 95:30 February 1995Health Policy Research UnitCentre for Health Services and Policy Research429 - 2194 Health Sciences MallUniversity of British ColumbiaVancouver, B.C.V6T1Z3TheCentre for Health Services andPolicy Research wasestablished by theBoardofGovernors of theUniversity of British Columbia in December 1990. It wasofficially openedin July 1991. The Centre's primary objective is to co-ordinate, facilitate, andundertakemultidisciplinary research in theareas of healthpolicy, healthservices research, populationhealth, andhealth human resources. It brings together researchers in a variety of disciplineswhoarecommitted to a multidisciplinary approach to research andto promoting wide dissem­ination anddiscussion of research results, in these areas. TheCentre aimsto contribute tothe improvement of population health by beingresponsive to the research needs of those resp­onsible for healthpolicy. To thisend.it provides a research resource for graduate students;develops andfacilitates access to healthandhealthcaredatabases; sponsors seminars, workshops,conferences andpolicy consultations; anddistributes Discussion papers, Research Reports andpublication reprints resulting fromtheresearch programs of Centre faculty.The Centre's Health Policy Research UnitDiscussion Paperseries provides a vehicle for thecirculation of preliminary (pre-publication) work of Centre Faculty and associates. It is intendedtopromote discussion andto elicitcomments andsuggestions thatmight be incorporated withinthework priorto publication. While theCentre prints anddistributes these papers for this purpose,theviews in thepapers are those of theauthor(s).Acomplete listofavailable Health Policy Research UnitDiscussion Papers andReprints, alongwith an address to which requests forcopies should be sent. appears at thebackof each paper. .1Research in Human Genetics: Promise, Pitfalls and Policy ChallengesIn this paper, I address three important questions regarding genetic research. They are:1. What are the key responsibilities regarding genetic research of the scientificcommunity, the media, voluntary health agencies, and individuals who are affected?2. Who should determine the allocation of resources to genetic research, including theproportion to go to basic versus clinical, and to incorporation of findings into clinicalpractice?3. What are the major ethical and social issues raised by application of increased geneticknowledge, and who should be responsible for addressing them?Clearly, anyone of these topics entails far more complexity than can be dealt withproperly in a brief discussion paper, and I will only touch on a few of many importantaspects in answer to each of the questions.1. Key responsibilities regarding genetic researchHere I will mention key responsibilities regarding genetic research of researchers,media, voluntary health agencies, and affected individuals. Aside from the groups mentionedbelow, there is also, of course, the public at large, and this is a perspective that should not beneglected. What is in the public interest clearly needs to be addressed; this aspect isconsidered in the later parts of this paper.a. ResearchersResearchers have a responsibility to ensure that the research projects they conduct areethical in that persons, genetic information pertaining to individuals, and tissues, are treatedwith respect. Ethical research involves fully informed choice to participate by subjects, whichof course has a cascade of both prerequisites and consequences. These are such aspects as fulldisclosure of risks, confidentiality, full disclosure of any conflict of interest, voluntaryparticipation etc. and have been well described in an extensive literature by now. It must alsobe noted that a research project is not an ethical use of resources unless there is thepossibility of generating useful information - the methodology must be scientifically valid.In general, researchers have an ethical responsibility to report promptly and openly theresults of their research. There are some particular situations which are exceptions, and whichshould, of course, have been fully disclosed to subjects, where commercial funding hasunderwritten the research and the market needs of the company mean if the results arepromptly disclosed, the market advantage will be lost. Researchers have a responsibility toreport in peer reviewed journals where a knowledgeable assessment by those in the field canbe given. Research results should not be reported directly to the media, where appropriateevaluation and assessment cannot occur.2b. MediaWhat are the media's responsibilities? Reporters have a responsibility to check theirfacts and the story for accuracy, and to present it clearly, without sensationalism. Yet quiteoften statements are reported as if true, without the reporter verifying if it is the case. Manypeople are concerned about how news is defined in today's world. If a topic can be presentedin a confrontational way, it is defined as news. A very common approach to a story is to get"an opposing view", and the issue is framed by the media as dichotomous - there are twoopposing views. Granted, this simplistic treatment arises in part from the nature of mediacoverage, and the time and space limitations that mean reporters must portray simplemessages. Unfortunately, many issues are not simple and this approach almost guarantees thatcomplexity and accuracy will be lost. For example, a simple dichotomous presentationdisregards the fact that all the weight of well documented opinion may be on one side of aquestion - such as the harmfulness of general screening for prostate cancer - and it has theconsequence that an individual with a belief in the opposite, a belief that is not supported byevidence, is presented as equal in weight by the media because it is the "opposing point ofview".Journalists have a responsibility to consider that opposing points of view should notautomatically qualify for equal treatment and equally wide dissemination. Lack of judgementin this regard does the public a disservice. Of course there are many issues on which itmakes sense to report several different views because the evidence is not in. But quiteconsistently, in an effort to achieve spurious "balanced" reporting, the journalistic approach toissues is to frame them in terms of two opposing views, and reporters neglect theresponsibility to use any personal judgement. As a result the public are confused and do notknow what to believe.c. Voluntary Health AgenciesWhat is the responsibility and special role of voluntary health agencies concerned withgenetic disorders? They are able to bring heightened awareness and focus to particulardisorders or clinical problems. They have shown they can certainly make a difference, andhave generated substantial funding to enable research targetted to particular disorders. Notonly generation of funding is important, but in concert with researchers, voluntary agenciesmay enable answers to be found much sooner by disseminating information aboutopportunities to participate in research projects. They are important in communicating both toresearchers and to the general public what it is like to deal day to day with a genetic disorder,and what the social and practical implications are for families coping with these situations.Drawing attention to the social and health realities of affected individuals can help identifyresearch priorities, and have a positive effect on technological development. The participationand perspectives of affected people are valuable in helping the research and developmentprocess lead to therapies that are beneficial and acceptable. Voluntary agencies have alsoplayed a pivotal role in advocating and generating support for services and informationresources for families.3d. Affected IndividualsWhat do I see as the key responsibilities of individuals who are affected or at risk?First of all, I think respect for human beings means we must respect their autonomy unlessthey choose to act in a way that harms others, so I fmd it a bit intrusive to say how affectedor at risk people should conduct themselves. If I were affected or at risk, I would choose tofmd out as much as possible about the disorder. What my choice would be regarding beingtested for genotype, or participating in research, would depend on a complex weighing ofrisks and benefits in the context of my values and life situation, but would include my moralobligation to take into consideration, as well as my own interests, the interests of other familymembers, and others in my community.An important point I'd like to make is that these four sectors should not be viewed inisolation - because if all four work cooperatively and as partners, the effects are synergistic.A dialectic operating between these groups is an essential part of getting researchopportunities and priorities identified, the output of which can be translated into the choice ofa better life for people. Mutual respect and good communication is the ideal way to makeprogress.2. Determining the Allocation of ResourcesI'd like to move now to the second question, namely - "Who should determine theallocation of resources to genetic research including the proportion to go to basic compared toclinical, compared to incorporation of fmdings into clinical practice?"The total amount of funding available for research is finite, so resources allocated toone of these three activities leave less to be allocated to the others. The money is notavailable to do all the research that could be of benefit, and so options need to be priorized,and trade-offs made. It is not possible to say allocation to basic research as a category is abetter decision than allocation to clinical research as a category, or to pilot studies forincorporating research fmdings into practice. So much depends on which basic researchproject is compared to which clinical research project. The problem to be solved is how todetermine an optimal balance of expenditures on the various categories of research activities.Finding a good balance overall depends on whether research tools and insights in a field areat the right stage to be likely to lead to "payoff' in basic research, or whether knowledge inthe field has evolved to a stage where the application of a technology into clinical practice islikely to lead to more benefit. Different fields of knowledge will differ in this.The public is a principal stakeholder in decisions about allocation because theyprovide the tax dollars or other contributions to underwrite the research. It must be kept inmind that at heart, research funding agencies do not exist to support scientists, but to use theskills and creativity of scientists in the interest of the public. There must be publicaccountability, and public trust, that the funds are being well used. This means the processesand criteria by which decisions about research funding priority are made should be as explicitas possible and publically accountable.4I am not going to answer directly the question of who should make resource allocationdecisions for research. Instead I am going to describe what I see as the situation currently,because I think it will lead to clearer thinking about what might be done to change things.Some kind of delegation of decision making is essential once a society has passed acertain size - all citizens cannot participate directly. The mechanisms for delegated decisionmaking in a democracy are federal, provincial and local governments and their agents. Just asdifferent levels of delegated decision making about health care resource allocation have beenidentified1, so too can different levels of decision making with regard to research funding.There is a macro-allocation level, where governments must decide how much to allocate toresearch, compared say to education or to transportation. This will determine in an overallway, funding to federal or provincial research bodies. Moving down to a meso level, theremay then be policies adopted by federal or provincial funding agencies (such as MRC) abouthow much goes to basic as opposed to clinical or service program oriented research. Then atthe micro-allocation level, (often fairly specific grant application review committees) there aredecisions as to whether this applicant or that applicant should receive grant funding or not.These three levels, of course, are not neat and tidy. Research funding and fundingbodies have "grown like Topsy" in Canada to fill different needs at different times and places,so there is not a neat, well organized structure across the country. Nevertheless, I think theconcept of these three levels may be useful. They are not, of course, isolated and independent- the amount available on macro-allocation will affect how much is available in certainprograms of MRC, for basic research, for example. Clearly also, at the micro level ofindividual grant application prioritization, the decisions in the meso and macro levels willhave an effect.It is important to recognize that the people making the decisions at these three levels ­macro, meso and micro - are different. Probably the skills required to make the decisions andthe vesting of authority to do so, also are different. At the micro level - whether this grantrather than that should be funded - researchers expert in that field have control and input intothe decision making. At the meso level (for example MRC, or to take my own province as anexample, SCHCRF), policies and decisions regarding what proportion of funding will bespent on different program areas (basic/clinical/service implementation) are made by trustees,board or council members, though with input from researchers. At the macro level, decisionsare made by political authorities, with differing degrees of input from researchers, the public,and lobby groups, although it is in the interests of politicians to take decisions in line withpublic values because they may otherwise not be re-elected.Thinking about resource allocation in terms of these different loci or levels leads tosome useful questions. Decision making at each of these levels of allocation involves settingpriorities. What criteria or what process at each level would lead to the most effective andbeneficial distribution of fmite resources? Are they the same or should they differ?5Another issue is public participation. There has been a loss of confidence in delegateddecision making and in authorities of all kinds in many Western societies, including Canada,which is very evident on polls. There is a worrying trend to viewing the usual mechanismsfor delegated decision making as inadequate or unsatisfactory. This has led to a call forgreater public participation on many public policy issues. There has been much talk aboutgreater public involvement in resource allocation decision making, particularly in the healthcare sector, but also with regard to research resource allocation. However, there are manyquestions about such public participation to be answered and thought through.' Is publicparticipation advocated because it is valued for its own sake? Or because it is thought thatsuch involvement will result in better allocations? In fact, is the public more likely thanexperts to make better decisions? Does this differ at the macro, meso and micro levels? Thereis little research evidence on whether increased public participation leads to "better" decisions.How could such participation be structured or work? Who would choose such individuals andhow? What would the costs and benefits be? Would forms of public participation (such aspublic representatives on committees; town hall meetings; focus groups; surveys; citizens'forums) differ at each of the macro, meso and micro levels I have outlined?An additional complexity is that individuals may bring different role perspectives todecision making - one perspective is as a potential user of the research findings, and the otheris a public policy perspective'. In other words, an affected individual perspective, and abroader public "community good" perspective. For example, someone who has had cancer islikely to put a higher priority on funding for cancer research than others. A related concept isthat the public in general have diffuse rather than concentrated interests with regard toresearch resource allocation policy. Researchers and some volunteer agencies tend to be betterorganized, have a large stake in the decisions - their interest is concentrated - and they havetherefore had more of a steering effect. Yet the preferences and priorities of individuals withconcentrated interests (for example, with a particular disorder) may be quite different thanthose expressed by members of the general public. Well organized groups with clearlyidentified interests are more likely to influence resource decisions than those holding diffusepublic interests even though the latter are far more numerous.'At the macro level of decision making, government is representative of and elected bythe public, and is accountable to the public for decisions it makes. As well as voting inprotest at the next election, the mechanisms for involving citizens in the public policydecision making process have been Royal Commissions, surveys of preferences and values,town hall meetings, citizen forums and focus groups. The Oregon experience was one attemptto involve citizens with regard to health care resource allocation.At the meso level, lay representatives have been appointed to the Boards of mostresearch funding agencies.I think it is important to acknowledge that the call for increased public participation inallocating research resources reflects a common feeling in the public that at core, thepriorities to be set are community and public preferences, and that provided the public6representatives have understandable information, technical experts are no better equipped thanlay people in weighing the values leading to resource allocation decisions. It does mean aprocess for providing lay individuals with balanced and relevant information is needed if theyare to participate appropriately. They need to be informed sufficiently to work through thescientific, ethical and economic issues on which many allocation decisions depend. Advocacythat is scientifically ill informed has dangers.The idea of increased public participation in resource allocation decisions for researchis endorsed by many as Ita good thing" without further specification. However, how suchparticipation might be actualized in an effective and useful way is not yet clear, and it can beseen that the question of who should make resource allocation decisions regarding research isa very complicated one, and may have different answers depending on the level of decisionmaking. Public participation in research funding allocation is an area that we need morediscussion and elucidation of concepts and proposals. If greater lay participation is to beadvocated, we need to ask explicitly, at what level? How chosen? From what perspective?With what goals? Participation may be appropriate to decision making at some levels but notothers; or the form it takes may need to differ. For example, consultation is different fromparticipation in decision making, but may be more appropriate at the macro level. Perhaps atthe macro level, individuals representing or accountable to a particular interest group are notappropriate in developing a public policy perspective? They may have a greater role at themeso level?With regard to how pertinent research findings and new technologies should beincorporated into clinical practice - decisions about providing new technologies must be partof the broader process of deciding what the health care system should be called upon to do. Itmakes sense that provincial ministries of health should fund clinical trials of newtechnologies, because it is the responsibility of these ministries to manage the health caresystem on behalf of taxpayers. It is from their budgets that such treatments, if demonstratedeffective in clinical practice, will eventually be paid for. Data from such trials will provideevidence on which to base rational use of health care funding, and allow better managementof the system. Provinces may well be able to share the cost of such trials and to avoidduplication by coordinating their efforts - for example, through the conference of DeputyMinisters of Health.3. Ethical and Social IssuesI come now to the third and final question "What are the major ethical and socialissues raised by application of increased genetic knowledge, and who should be responsiblefor addressing them?" Clearly this is a very large and complex area. I've listed below some ofthe issues raised, and I would recommend Chapters 24 to 29 of the Final Report of the RoyalCommission on New Reproductive Technologies to those who are interested in more detail onthese topics,"7• Restriction of autonomy (coercion)• Invasion of privacy• Commodification of genetic patrimony (patenting)• Attitudes to "avoidable" disability• Diversion of resources, opportunity costs• Workplace discrimination• Stigmatization, labelling• Unwanted knowledge regarding risk• Commodification of children• Sex selection• Genetic alteration for "improvement"• Inequity in access• Skewed view of illness as "genetic"Rather than address specific issues such as those listed above, I will give an overallframing of what I think is important, and then how I think the problem should be dealt with ­who should be responsible.We are in the midst of a worldwide knowledge revolution with regard to genetics.How scientific knowledge about human genetics is applied has the potential to change andaffect how our society views individuals and their relationship to each other. Applying thisknowledge to the human situation clearly raises much more than health issues - it raisessocietal, ethical, legal and economic issues. Our responses to the choices about how we usegenetic technologies and genetic information will say much about what we value, what ourpriorities are, what kind of society we want to live in. Any deliberate identification ofgenotypes, and actions as a consequence of that identification, should be approached withboth compassion and caution, and with an awareness of the harms as well as benefits thatmay result from use of genetic knowledge.Capitalism and the market are major forces in today's societies. This must be takeninto account with regard to setting public policies related to how we use genetic testing andknowledge; interests that are vulnerable must be protected against commercial activity.Commercial organizations are designed, both in objectives and their management to promotea single interest - to make money. They are not expected or designed to balance conflictinginterests. If market forces were allowed to drive how genetic technologies are used, it wouldundermine important social values and harm people by leading to inappropriate, unethical orunsafe use of technology. Rather than market forces, principled social policy arrived at afterwide input, should ensure that developments and use of genetic technology and knowledge isused to people's benefit. It is government's responsibility to ensure that appropriate regulationand policy is in place to guard citizens interests. Commercial activity in the field of appliedhuman genetics should occur only in the context of a regulatory framework that ensures themarket is not the deciding factor behind the provision of genetic testing or genetictechnologies.8Clearly the interests of commercial firms and the interests of consumers are notidentical. Throughout our economies, and in an open market, it is assumed that buyers canprotect their own interests. In the market place, the basic protections for consumer interestsare information and choice. But the situation is different when medical procedures such asgenetic testing are involved - individuals do not have sufficient knowledge or information toprotect themselves, and their interests are vulnerable while the commercial firms' interests arenot. In the medical field, protection of vulnerable interests is therefore required throughsocieties' rules and regulations, as well as professional ethics. Recognition of the need toprotect interests that are not able to protect themselves is at the heart of all professional andhealth care regulation - the question is not whether there should be regulation of commercialactivity in the medical field and in genetic testing, but rather what form it should take.Not only individuals but the wider community too has vulnerable interests that needprotection from commercial activity in the field of human genetics. We all have a stake in thenature of the society in which we live - that it not be one in which people are discriminatedagainst or viewed as not equal to others because of their genetic makeup.All of us take a risk of a few percent that a child will have a serious congenitalanomaly or genetic disease. Some people are at greater risk, and the Royal Commission onNew Reproductive Technologies found a large majority of citizens think that prenataldiagnosis should be available to those people. However, more and more conditions arebecoming amenable to genetic diagnosis, and decisions will be needed about what it isappropriate to offer publicly supported services for. For example, prenatal diagnosis is widelyused in some countries for sex selection. Wide-based public input into that process is essentialif policies are to respect the values of citizens. We found that the public are fearful thatgenetics will be misused. They want to know what is being done in genetics. It is an area ofconcerns and one they want to be open, accountable and transparent in policy making.It is clear that as well as benefits there are potential harms both to individuals, and tothe society, from misuse of genetic identification or alteration. This means some uses ofgenetic technologies should not be permitted; some are beneficial and should be supported;some should be within particular limits. The Royal Commission recommended that theCanadian government, as the guardian of the public interest, should make sure the applicationof genetic technology to people is regulated and within boundaries. No other social institutionis sufficiently broad based or has the mandate to set a system in place. Because theknowledge base in genetics is changing rapidly, and social attitudes also may change, theregulatory system must be ongoing, and be able to respond to changes.We recommended two things. First, we recommended legislation to prohibit certainuses of technologies (such as using embryos in research related to cloning, and makinganimal/human hybrids), and certain commercial activities (selling of eggs, sperm, embryos,fetal tissue).9Second, we strongly recommended that the federal government establish a nationalregulatory body with licensing required for the provision of certain reproductive and genetictechnologies to people. We recommended that a National Commission be set up to regulateand license provision of services in five areas, that it be arm's length from government ­composed of 12 members, with women normally making up at least half, and includingpeople with a broad range of experiences, perspectives, and expertise. To ensure openness andtransparency, we recommended that licence hearings should be public and that theCommission should report annually to Canadians through Parliament on what is occurring inuses of technology.We recommended the National Regulatory Commission have sub-eommittees toregulate five areas where it will be compulsory to have a licence to provide services topeople. A licence to provide services would be conditional on complying with certain clearlyspecified conditions. Two of these sub-committees are relevant to genetics; they are thecommittees for prenatal diagnosis for genetic disorders and congenital anomalies, and forresearch involving human zygotes. An advantage of this system is that it can respond tochange in knowledge with a change in the rules that must be complied with to have a licence.What needs to be done is common to all the technologies. We need to set policies after wideinput, to have compliance with those standards and policies, and to collect information andmonitor what is going on. It may be in future that another sub-eommittee may be helpful todeal with genetic testing and alteration in general.These sub-committees should build on previous efforts by geneticists and physicians,as they have already done a lot of work on developing guidelines and standards of practice.Many of the technical, quality control and specialized training assessment aspects can only bedone by practitioners in this field. In fact, we envisage accreditation by the Canadian Collegeof Medical Geneticists as a pre-requisite for licensing by the National Commission.Nevertheless, primary responsibility for setting policies regarding use of scientific knowledgeof human genetics cannot be left entirely to self-regulating professional bodies. Self regulationis necessary but is not sufficient in this field. Many of the policy decisions are social,economic and ethical, and a body reflecting other than medical perspectives is needed to setsuch policies, and to ensure they are in the public interest. The national body and clearprocess recommended would enable the public to have confidence that policies were being setin the interests of Canadians, and make it clear they were not being subject to manipulationfrom commercial, scientific or other specific interests.Prenatal testing and in the future, other genetic testing, need to be offered within aframework of regulation and program guidelines. Those tests that have been offered at centres(amniocentesis, CYSt detailed diagnostic ultrasound) have been introduced in this way, withrigorous assessment, associated counselling, and follow-up. Canada has a history ofcooperation between genetic centres with multi-eentre trials early in the history of thosetechnologies used for genetic diagnosis at centres. In contrast, those tests that can be offeredoutside centres, for example MSAFPt and routine ultrasound, have shown a very patchyquality control; they have simply proliferated before being assessed. They are easy to do and10many thousands of physicians can carry them out - practitioners are very dispersed. There arealso fmancial incentives for doctors to perform them. This kind of ad hoc proliferation oftesting outside program guidelines is of concern because the pace of development of geneticknowledge that could be applied is not going to lessen. If testing is not effective or beneficial,it subjects people to unnecessary procedures, may lead to harm, furthers inappropriatemedicalization and uses resources poorly with substantial opportunity costs. For example over$100 million is spent annually on routine prenatal ultrasound in Canada without evidence thatit leads to measurably better outcomes.'The desire of parents for information about the fetus (and in future about themselves),together with continuing scientific discovery, is likely to produce a steady stream of newdevelopments. For example, because maternal blood during pregnancy contains some fetalcells, tests for sex (or indeed for a wide variety of other gene associated traits) will likelybecome possible. The rapidly increasing abililty to identify genotypes in healthy people thatmay be associated with increased risk for disease may have harmful consequences to their selfconcept and happiness, to their employment and other opportunities. There is a danger thatthe market will intrude with direct marketing of such testing by companies to the public andto individual doctors and lead to misuse and poor quality control. It is essential to put aregulatory framework in place so that testing does not cause social and ethical harm.The emphasis on genes and DNA has had the consequence of promoting the view thatgenes are the major determinants of most illnesses. This is not the case. Social andenvironmental factors have a major impact and need to be addressed. Framing illness as dueto "a gene" leads to individual solutions addressing physiological parameters, neglecting socialsolutions that may not only be equally effective, but may help to build a more just society.Between the extremes of unquestioning acceptance and outright rejection ofapplication of genetic knowledge to the human situation is an approach based on anexamination of evidence. This evaluation must be done in the context of the broaderimplications for individuals and for societies. If we ignore their ethical and socialimplications, or allow them to proceed without discussion of their positive and negativeaspects, use of genetic technologies could bring about changes that contradict or clash withour society's values and beliefs, and we will become less tolerant and caring as a result.Individuals have a responsibility to inform themselves as fully as possible beforemaking decisions about the use of genetic testing, but governments on behalf of citizens havea responsibility to ensure that inappropriate and unethical use of technology is not occurring.How we apply genetics is not at heart a medical matter, but a matter of social policy. Manynations are grappling with these issues. Only if public policy, not the market, determines whatis available in genetic testing and technology will the vulnerable interests of individuals andsocieties be protected. At the same time humane public policy would still allow scientificknowledge about genetics to be used to better the lives of many individuals. The field isevolving rapidly. We cannot tum back the clock, we cannot close our borders and we are allgoing to have to respond to how to deal with this knowledge revolution in genetics. We need11to set limits based on what society considers to be acceptable activities in the field of geneticresearch and treatment; to establish systems for managing the application of genetictechnologies within these limits; and to provide mechanisms for continuing review andevaluation, with public and open participation, as ethical and scientific issues in this fieldemerge and evolve. How we choose to use, or not to use, our technological capacities ingenetics will help to shape society for our children and for their children. It is essential thatwe deal with them wisely.12References1. Yeo, M. 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"EnvironfTl8flt &Health: InCentral andEastern Europe" Gbst $12.00"Environment &Health: Incentral and Eastern Europe". August 1994. (C. Hertzman) cost $12.00Why Not User Charges? The Real Issues. December 1993. (G.LStoddart, M. L Barer, R. G. Evans, V. Bhatia)cost $8.00Who Are the ZOmbie Masters, and What Do They Want? December 1993. (R.G. Evans, M. L Barer, G.LStoddart, V.Bhatia) cost $5.00User Charges, Snares and Delusions: Another lookatthe Uterature. December 1993. (G. L Stoddart, M.LBarer, R.G. Evans,) cost $8.00The Remarkable Tenacity ofUser Charges: A Concise History ofParticipation, Positions, and Rationales ofCanadian Interest Groups In the Debate over "Direct Patient Particlpation"in Health Care Rnanclng. December1993 (M.L Barer, V. Bhatia, G. L Stoddart, R.G. Evans,) cost $8.00IrsNot the Money, Irs thePrinciple: Why User Charges for Some ServIces, and Not Others. December. ( R.G.Evans, M. L Barer, G.LStoddart, V. Bhatia) December 1993 Cost $8.00Charging Peter toPay Paul: Accounting for theRnancial Effects ofUser Charges. December 1993 ( R.G. Evans,M. L Barer, G.LStoddart) Cost $12.00Tip-toeing Toward Health Care Reform In the United States. January 1994. (M. L Barer, E. Morrison, I.MorrIson) Cost $5.00Barer, M.L,MorrIson, E., MorrIson, I.(1994) "Canadian Physicians may hear footsteps ofchange asUS tiptoestoward health care reform", Canadian MedicalAssociation Journal, Vol 150 (6), P980-987.This Is arevIs8dandshortened version of94:10Evans, Robert G. "Less Is More: Contrasting Styles InHealth Card Canada and theUnited States, Differencesthat COUnt 21 -41. No chargeAvalanche orGlacier. Health Care and the Demographic Rhetoric. March 1994. (M.L Barer, R.G. Evans, C.Hertzman) Cost $8.00Diagnostic andSCreening Programs for Fetal Anomalies and Genetic Disease: How should we evaluate them?April 1994. (P. BaIrd) Cost $8.00HPRU 94:50HPRU94:6RHPRU94:70HPRU 94:80HPRU 94:9RHPRU 94:10RHPRU 95:10HPRU95:20IlAln'tNecessarily So: The Cost Implications ofHealth Care Reform In the United States. April 1994. (M.L Barer,R.G. Evans, Matthew HoI~ J.I.MorrIson) Cost $8.008lencwelg, A.Y. and Pagllccla N. (1994), "Utilization Patterns ofCohorts of 8der1y Clients: A Structural EquationModel", Health ServIces Research 29(2): 225-245.Health, Hierarchy 81Jd Homlnlds: Biological Correlates ofthe SockrEconomlc Gradient In Health, August 1994(R.G. Evans) Cost $8.00An Empirical Evaluation ofComputerlz9d Databases for Emergency Care. October 1994. (George E. Pugh,Joseph K. Tan) Cost $8.00Evans, R.G. (Fall 1994)"Heallh and Wealth", Da9dalus, Journal ofAmerican Academy ofArts and Sciences bbbb123 (4):21-42Hogg, R.G., Strathdee, SA, Craib, K.J.P., O'Shaughnessy, M.V. and Montanar, J.S.G., SChechter, M.T. "Lowersocioeconomic status and shorter survival following HIV Infection", 7h8 Lancet, Vol 334, p 1120-1124.So Near, AndYet SoFar: January 1995 (Morris L Barer) Cost $5.00Marketing the Market, Regulating RegUlators: Who Gains? Who Loses? What Hopes? What Scope? January1995. (Robert G.Evans) $8.00

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