Rights and Responsibilities in the New Genetics Era

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DOI: 10.1177/0261018303023002005

2003 23: 208Critical Social PolicyAnne Kerr

Rights and Responsibilities in the New Genetics Era

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A N N E K E R R

University of York

Rights and responsibilities in the new genetics era

Abstract

This article critically explores the distribution of rights and responsi-

bilities associated with recent developments in genetic testing and

DNA donation. The author identifies two key discourses in various

accounts of genetics in the clinical and policy domains: patients rights

to informed choice and the publics right to involvement in policy

decisions. However, other discourses among professionals, patients and

members of the public around responsibilities for supporting genetic

research and testing and managing their social implications are also

present. The author goes on to argue that these discourses undermine

the case for a dramatic difference between past eugenics and present

genetics, as the prevention of genetic disease remains of paramount

importance. This suggests that new genetic citizenship is not so new

after all.

Key words: citizenship, clinic, eugenics, policy

Introduction

The new genetics is often said to have transformed contemporary

medicine. Genetic testing is now available for a range of single gene

disorders such as cystic fibrosis (CF) and Huntingtons disease.

Research into the genetic aspects of complex and common diseases,

such as cancer and heart disease, holds the potential for a range of

screening technologies to predict individuals risks of illness in the

future and to prevent these diseases via targeted drugs and treatments.Whether these predictions will come true is, of course, a matter for

debate, but the powerful emphasis on individuals rights to choose

whether or not to be tested is not.

Copyright 2003 Critical Social Policy Ltd75 0261-0183 (200305) 23:2

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This contemporary emphasis upon individual choice and pre-dictive genetics is often taken to mark a definitive break from pasteugenics (Rabinow, 1996, 1999a, b; Rose, 1999, 2001). In thisformulation, eugenics is defined as a series of coercive policies andpractices designed to eliminate defective genes from the population.This involved the compulsory sterilization and institutionalization ofthe so-called mentally defective as well as public health measuresdesigned to breed better babies, which were enacted in manycountries during the early part of the 20th century (Kerr andShakespeare, 2002; Kevles, 1995). After the Second World War,reform eugenics consisted of genetic counselling and marriage guid-ance to avoid the birth of children with genetic disorders. Profession-

als began to offer couples reproductive choices through prenataltesting and screening. Presymptomatic genetic tests were also devel-oped for late onset conditions such as Huntingtons disease. In thewords of Nikolas Rose, our very biological life itself has entered thedomain of decision and choice (Rose, 2001: 22; see also Rabinow,1996). Patients and professionals are said to be forming new relation-ships, different from the hierarchical arrangements of the past. Forexample, patient support groups have formed partnerships with

medical professionals to raise funds for the study and treatment oftheir disorder. What counts as expertise (and indeed illness) is said tobe increasingly contested in an era when patients rights are para-mount (Rabeharisoa and Callon, 2002; Rabinow, 1996).

This apparent renegotiation of citizenship is taking place at a timewhen there is also an increasing emphasis upon broader publicinvolvement in policy making about genetics (Barns et al., 2000;Davison et al., 1997; Kerr and Cunningham-Burley, 2000). This form

of active citizenship is often invoked by genetic policy makers andtheir critics in both radical and patient support groups. As Petersenand Bunton (2002) note, individual autonomy and a consensualsociety (exemplified in the work of Habermas) are key priorities for allof these groups.

The emphasis on the scale and pace of change in these two formsof new genetic citizenship (Petersen and Bunton, 2002) also chimeswith genetic researchers and clinicians emphasis on transformations

in genetics. Professional elitism and autocracy are said to havetransformed into relations of partnership with patients and the publicand transparent, accountable practices. Genetic knowledge is also saidto be more sophisticated, especially with respect to the links between

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genotype and phenotype (or genetic and environmental factors) (Kerret al., 1998c). There is also a powerful commercial discourse oftransformation that underlines the novelty and desirability of newgenetic treatments and diagnostic technologies, highlighting theirpowers to predict and cure genetic disorders that were previouslytaken for granted.

Noteworthy research programmes that address the social andethical dimensions of the new genetics, at the behest of a range ofcorporate, medical and social research agencies, also highlight trans-formations in and around the new genetics. For example, the Eco-nomic and Social Research Councils Innovative Health TechnologiesProgramme (co-funded by the Medical Research Council and Glaxo-

SmithKline; see: http://www.york.ac.uk/res/iht/) and the WellcomeTrusts Medicine in Society Programme both stress, in the words ofthe Wellcome Trust, the breathtaking pace of discovery in the lifesciences and the unprecedented questions this poses for society (see:http://www.wellcome.ac.uk/en/1/mismis.html).

Without denying that new technologies, peoples sense of self andforms of politics associated with the new genetics are dynamic andcomplex, I want to query this prevailing emphasis on transformation.

Although it is important to reject simplistic parallels between theeugenics of the past and the genetics of the present, there is a dangerthat this focus on transformations is resulting in less attention beingpaid to continuities between the past and present, particularly theways in which autonomy, participation and contingency might beundermined by new developments in genetic testing, screening andpublic consultation. Genetic information that is presented in certainterms, genetic counselling that is explicitly directive, and elitist and

antidemocratic aspects of policy making about genetics are less likelyto be considered when transformations are privileged (for exceptions,see Kerr and Shakespeare, 2002; Paul, 1992; Petersen and Bunton,2002; Williams et al., 2002a, b, c). The more established and routineforms of antenatal screening and the traditional format of patientsupport groups (funded and in many cases managed by other largergroups that are dominated by medical professionals) are also less likelyto be interrogated when newer forms of presymptomatic testing

and proactive web-based support groups are foregrounded (Novas andRose, 2000; Polzer et al., 2002; Rabinow, 1996, 1999b). This mightmean that the discourse of patients and the publics rights is notnecessarily an indicator of an increase in their autonomy or influence

210 C R I T I C A L S O C I A L P O L I C Y 2 3 ( 2 )



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on the policy process. Professional discourses of responsibility andchoice, such as the ways in which they might articulate a sense oftheir obligation to advise and guide people in genetic counsellingsessions and in policy making, are also being overlooked in studiesthat tend to focus upon the impact of new genetic technologies onpatients.1

A full assessment of the form and extent of new genetic citizen-ship would require an exploration of how rights and responsibilitiestend to be distributed between patients, publics and professionals inrelation to a range of genetic services, support groups and publicconsultation exercises. A comparison between the framings of pro-fessionals, patients and the publics rights and responsibilities would

also be necessary. Although such an exercise is beyond the scope ofthis article, I offer a preliminary analysis of some accounts of therights and responsibilities of patients and professionals in relation tothe genetics clinic and policy process by way of a contribution to thiswider project. I highlight some of the key discourses and go on toargue that these suggest some important continuities between geneticcitizenship in the past and present. This underlines the need forfurther investigation of the dynamics of citizenship in the era of the

new genetics.

Citizenship and the genetics patient

Patients rights and responsibilities are frequently addressed in pro-fessional and policy discourses about genetic testing and screening.Genetic counselling is repeatedly cast as non-directive and explicitly

contrasted with the eugenics of the past (Kenen, 1997; Paul, 1992;Petersen, 1999). Genetic counsellors devote considerable attention tothe factors involved in peoples decisions to take a genetic test in aneffort to understand how best to facilitate their patients autonomy(see Biesecker and Peters, 2001; see also Pilnick, 2002; Rapp, 2000).Individual choice is also an important ideal for other professionals andpatient organizations concerned with genetic services (Clarke, 1995;Cunningham-Burley and Kerr, 1999; Kerr and Shakespeare, 2002;

Kerr et al., 1997; Lippman, 1992; Petersen, 1999; Shakespeare,1999). Clients rights of refusal are stressed in genetic counsellingprotocols and ethical guidelines (see Clarke, 1991, 1995). The self-imposed ban on the testing of children for late onset genetic disorders




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among clinical genetics in the UK is another example of professional

efforts to limit coercion in this area (Clarke, 1991, 1995). Profession-

als and patients organizations also emphasize patients rights to access

genetic services in contrast to their obligations to use them. In thisformulation, health consumers have equal rights to partake of genetic

screening, and genetics services should expand accordingly (Davison

et al., 1997; Henn, 2000; Kerr and Shakespeare, 2002; Lupton,

1997).

It would, however, be wrong to assume that this signals a

straightforward increase in patients rights (to choice, information and

service provision) and a corresponding increase in professionals

responsibilities (not to direct or advise their clients) for severalreasons.

First, the contemporary emphasis on patients rights to choose

does not necessarily subsume patients sense of responsibility to

participate in testing and to encourage their families to do the same

(Petersen, 1999; Robertson, 2001; Rose, 1990). A range of empirical

studies have found that many people express a sense of their responsi-

bility for health surveillance and illness prevention in relation to

genetic disease (Polzer et al., 2002; Rapp, 2000). As Hallowell andothers have documented, the decision to take a genetic test and to act

upon the results is profoundly shaped by clinicians portrayal of

responsible and positive health behaviour (Burke and Kolker, 1994;

Hallowell, 1999a, b; Marteau, 1989; Press and Browner, 1997; Rapp,

2000). This generates further obligations on the part of clients to

engage in genetic testing.

Second, genetic counselling sometimes involves explicit guidance

being provided by some counsellors to certain types of clients(Johanson et al., 2000; Kerr et al., 1997; Marteau et al., 1993, 1994),

particularly when the client is perceived to be in a high risk group.

This type of advisory role is controversial. Clinical geneticists and

genetic counsellors can be highly critical of the directive approach of

some of their colleagues in other branches of medicine such as

obstetrics or oncology (see Clarke, 1991). But some clinicians see it as

their role to guide their clients. The advice given to men who are

seeking fertility treatment because of a form of infertility linked to CFis one such example. There is evidence that these men and their

partners are sometimes strongly advised to take a genetic test for CF

by some infertility clinics (Kerr and Cunningham-Burley, 2000). Not




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all professionals stop short at mandatory counselling; some even

advocate mandatory testing when both partners are known to have

one or two CF mutations. For example, in a review article about pre-

implantation genetic diagnosis where CF and CBAVD (CongenitalBilateral Absence of the Vas Deferens) are discussed, one group of

clinicians and scientists from Belgium wrote:

Couples in which the men have CBAVD and the women carry a CF

mutation might have children presenting CF [through IVF]. Mutation

screening in both partners and counselling about their risk of having a

CF or CBAVD child is mandatory for these couples. When both partners

are carriers of CF mutations, pre-implantation diagnosis can eventually

be carried out in order to transfer unaffected or carrier embryos. (Liu etal., 1996: 533; emphasis added)

Hallowell (1999a, b) has also argued that professional advice is quite

acceptable to some clients and their counsellors in the context of non-

reproductive decision making, for example around breast cancer

genetics. Marteau and colleagues have also shown that pregnant

women are often advised to participate in reproductive screening

during pregnancy (Marteau et al., 1993, 1994; see also Green,1995).

Third, clinicians influence extends beyond the bounds of the

clinic to the establishment and agenda of many patient support

groups and charities who campaign for service provision and scientific

research (Barnes et al., 1999). A good example of this is the CF Trust

and the (now disbanded) Association of CF Adults. The Association

was set up during the 1980s by people with CF, including one

medical student, after prompting from the director of the CF Trust.

2

But, as more adults survived and began to take on a more influential

role in the Trust (lobbying the NHS for better services, for example),

there was less of a need for the Association to continue, as its priorities

merged with those of the mainstream Trust. However, the Trust did

not transform into a patient-led organization. Medical experts con-

tinue to dominate the membership of important committees, particu-

larly where research funding and public education are concerned.

Other influential patient groups, such as the Genetics Interest Group(GIG), are far from grassroots organizations for people affected by

genetic conditions. GIG works closely with the medical and scientific

establishment to support genetic research and expansion of services.




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These two examples suggest that patients influence over genetic

research and services via patient organizations should not be over-

stated, as patients interests can be defined and articulated by pro-

fessionals linked to these groups. They also signal the continuedimportance of professionals responsibilities for the social support

of their clients, concerns that have been articulated in a range of

individual and group interviews and are the source of considerable

tension between professionals (Kerr et al., 1997, 1998a; Williams et

al., 2002a, b, c). Involvement with patient groups is one of the ways

in which professionals support their clients and bring their disease to

wider public attention. Professionals sometimes also take on responsi-

bility for advising their clients on dealing with insurance companiesor employers in order to minimize the potential for discrimination

that might result from a negative test result. Professionals try to

prevent the negative consequences of genetic screening in order

to improve its social acceptability and its uptake among high risk

groups, thereby facilitating its role in disease prevention (Kerr et al.,

1998c). These forms of professional responsibility can support

patients rights (for example, to informed choice and privacy), but

professionals responsibilities in these domains can also enhancepatients responsibilities to proceed with genetic testing and disease

prevention measures such as further screening or prophylactic

surgery.

The discourse of patients rights to informed choice and service

provision in professional and policy discourses is very prominent. But

peoples accounts of their experiences of testing (as patients and

professionals) and social analysis of the dynamics of counselling

sessions suggest that people have a profound sense of responsibility toutilize genetic testing and prevent genetic disease. Professional

responsibilities for non-directive counselling are also highlighted in

policy documents. But this can be contrasted with professionals sense

of responsibility for clinical advice and wider social support and

guidance. Professionals involvement in shaping the agenda of some

patient groups is an extension of this responsibility. This suggests

that patients and professionals have shared responsibilities for the

prevention of genetic disease (Wertz and Gregg, 2000) responsibili-

ties that chime with those of patients and professionals in the past, as

I shall go on to argue later. While these responsibilities are by no

means overarching or deterministic, they must be acknowledged as




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important aspects of genetic citizenship that interpolate rights toautonomy and access to genetic services.

Citizenship and the public

When one turns to consider citizenship in its broader sense ofparticipation in policy making about genetics, similar trends to thoseoutlined above can also be identified. Influential bodies like the RoyalSociety, the Human Genetics Commission (HGC) and the WellcomeTrust have moved away from the so-called deficit model of publicunderstanding of science in recent years, which focused upon what the

public did not know about genetics and sought to remedy this witheducation campaigns. Policy makers now tend to favour publicengagement with genetics, which involves professional transparencyand dialogue between professionals, patients and publics. The empha-sis here is upon the publics right to information and participation indiscussions with professionals. Professionals are, in turn, responsiblefor taking the publics views seriously. However, many of the pro-fessional groups with an interest in public engagement with genetics

continue to emphasize the need for public education. For example, theRoyal Society Science in Society Programme (see: http://www.royalsoc.ac.uk/templates/scienceinsociety/index.cfm), the BBCs genestory initiative (see: http://www.bbc.co.uk/genes/) and Cafe Scienti-fique meetings (see: http://www.cafescientifique.org/) all have a strongeducational element. There is a sense in which members of the publichave a duty to become educated about the technical and ethicalaspects of genetics before full participation can occur. The public

therefore remain somewhat dependent upon professionals for theprovision of this information and the construction of a moral codewith which to judge it.

This focus on public education is, in part, an outcome ofprofessionals sense of responsibility for engaging with the socialimplications of their work (Kerr et al., 1997). It can also be linked totheir desire to counter public misunderstanding and distrust ofgenetics and to reassure the public of the ethical character of con-

temporary genetics. This involves considerable criticism of the mediafor its mixture of genohype and genophobia (despite contentanalyses that suggest that the media coverage of genetics is morefavourable to genetics than professionals tend to think; see Kitzinger,




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forthcoming). Professionals are also known to reflect upon their own

responsibilities for overinflated claims about the potential of their

research. A recent example of this is Michael Rutters presidential

address at the Society for Research in Child Development, where heargued against misleading hype and scientific evangelism about

susceptibility genes involved in personality and behaviour (Rutter,

2001). Dean Hamers public position on the dangers of the so-called

gay gene reinforcing homophobia and Ian Wilmots condemnation of

reproductive cloning are other good examples of publicly voiced

professional caution about the implications of their research. Dis-

agreements among professionals about the ethical implications of

their work are further evidence of their sense of social responsibility inthis regard.

Professionals commitment to public engagement and ethical

reflection is not a crude conspiracy to control the public agenda, but it

does not necessarily signal a decline in their influence over the public

representation of genetics or policy networks concerned with genetics.

Despite greater lay involvement in advisory bodies such as the HGC,

increasing numbers of public consultation exercises and greater trans-

parency about the workings of these bodies, members of the publichave little influence over their remit or recommendations. As Irwin

(2001) comments, the terms of policy agendas about genetics tend to

be preframed rather than open in the sense that they assume the

inevitability of technological developments and commercial benefit

from that development. There is also a tendency to concentrate upon

the publics views about the implications of technologies rather than

their views on what research ought to be conducted. In this sense, as

Irwin argues, the role of the public is more reactive than active. Thefocus of public consultation exercises is often narrowed to concentrate

on technical possibilities and their specific implications for legislation

rather than wider concerns about the stigmatization of people with

disabilities, for example. The tendency to focus on technicalities, such

as the wording of informed consent forms, also reflects a focus on the

rights of individual patients as opposed to those of the wider

community. For example, the recent HGC report entitled Inside

Information: Balancing Interests in the Use of Personal Genetic Data (2002)ignored the elephant in the corner (patenting DNA), concentrating

instead on informed consent to the use of personal genetic

information.




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This suggests that the publics rights to participation in decisionmaking about genetics are rather more provisional and muted thanthe rhetoric of public engagement might suggest. As Petersen andBunton (2002) and others such as Dunkerley and Glasner (1998) havecommented, the usual framing of the publics right to participation ingenetic policy making can sometimes slip into the suggestion thatthey have a responsibility to participate in these debates in order toforestall the dangers of eugenics a responsibility that they sharewith professionals. The public are supposed to educate themselves andengage in informed debate in order to stem the potential for abuse ofgenetic information. Yet, as has been argued above, there are fewroutes through which members of the public can influence research

priorities and regulation. Instead, members of the publics responsibil-ities for abuse prevention appear to be largely diffuse and abstract asignal that professionals cannot be held entirely responsible for theimplications of their research.

This emphasis upon the publics responsibility for policy engage-ment is mirrored in other recent developments in the area of geneticdonation, such as the proposed UK Biomedical Population Collectionor UK Biobank, as it is known. Biobank would involve half a million

UK citizens between the ages of 45 and 64 years. Although the exactdetails of the study are as yet unclear, recruitment of research subjectsis expected to take place through general practitioners. The WellcomeTrust is one of the key organizations involved in Biobank and is veryaware that the success of Biobank is dependent upon public goodwill.Hence the distinct air of confidence building in Wellcomes recentefforts at public consultation on Biobank. This is evident in thefollowing statement, taken from the protocol for the collection:

The research has shown that there was little existing knowledge of the

proposal but that it was accepted in principle. However, there was

significant misunderstanding and misinformation about genetics

research. The research had underlined the importance of good commu-

nication with participants and getting informed consent to what is

proposed. It was also important that the proposed resource should be

owned by the public sector. Oversight by an independent body would

reassure the public that the data were being managed and used in the

public interest. (Wellcome Trust, 2001: 1)

This conclusion stresses the publics lack of knowledge and theimportance of countering misunderstanding and reassuring the public




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about the benefits of Biobank. The publics rights to determine thescale and scope of Biobank are not considered. The protocol evendefines the citizens role in Biobank as one of self-surveillance andinformation provision to clinicians rather than as members of anyindependent overseeing body (although doubts were also expressedabout citizens competency or willingness to engage in suchsurveillance).

A more recent Wellcome consultation exercise also stressed asimilar kind of citizen involvement in Biobank. A study by PeopleScience and Policy Ltd dismissed some participants scepticism aboutthe need to conduct research into an area where a lot is already knownabout genes and disease and claimed that there was little evidence of

concern about the use of this information to study genes involved inbehaviours or personality findings largely at odds with otherresearch in this area (for example, Kerr et al., 1998b). The report alsodrew conclusions such as Taking part must be made as easy aspossible. People may look for excuses to justify their inertia(see: http://www.wellcome.ac.uk/en/images/biobankuktrust_5973.pdf).These particular public consultation exercises seem to have beenfocused upon finding better ways to foster the publics sense of

responsibility to participate in large-scale genetic surveillance. Mean-while, it is professionals who are primarily responsible for theprocesses of ethical scrutiny and judgement of this initiative.

Policy discussions about genetics must also take the rights andresponsibilities of the private sector into account. Prior to thesimultaneous publication of the draft genomes by the Human Gen-ome Project (HGP) and Celera in 2000, the HGPs head FrancisCollins talked about patenting in an interview with CNN, where he

noted the importance of balancing the interests of producers and thepublic in such a way as to recognize rights of ownership of novelproducts, thereby encouraging research and development in genomics,and to protect the public interest by preventing ownership ofso-called raw genetic information, which would stifle research(see: http://www.cnn.com/SPECIALS/2000/genome/story/interviews/collins.html). This emphasis on balancing public and private interestspresaged the subsequent emphasis on partnership or synergy between

the private and public sectors in the genomics field. Notwithstandingthe emphasis of high profile campaigns like those of Sir John Sulstonand the Wellcome Trust against the privatization of public knowl-edge, the mutual priorities of the public and private sectors mean that




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they are frequently cast as partners, sharing medical expertise andcommercial ownership of public data on behalf of the public interest.For example, the UK Medical Research Council (MRC) recentlypurchased access to Celeras database on the basis that it would allowUK scientists to maintain their competitive edge (see: http://www.mrc.ac.uk/index/public_interest/public-topical_issues/public-celera_genomics_database.htm). Professionals responsibilities forknowledge production and disease prevention and private rights toownership are finely balanced in agreements such as this. The publicsand/or patients rights to ownership of genetic information appear tobe secondary concerns.

It is interesting to speculate about the relative weight that will be

given to patient, professional and private rights and responsibilities inthe forthcoming decision concerning the Myriad patent on genesinvolved in hereditary forms of breast and ovarian cancer (BRCA 1and 2) and the use of breast cancer genetic tests by the UK NHS.High profile UK geneticists like Martin Bobrow and organizationssuch as the Clinical Genetics Society have expressed opposition to theMyriad patent on the grounds that it will undermine patients rightsto the test because of its prohibitively high cost. Many members of

the public are also hostile to developments in gene patenting on thegrounds that it will undermine research and service provision (see:http://www.hgc.gov.uk/business_publications_morigeneticattitudes.pdf). But there are strong economic pressures on the British govern-ment to uphold private rights to ownership through the patentingsystem. As Abraham and Lewis argue with respect to the regulation ofmedicines more broadly, the limited concessions made to consumeristdemands have been far outweighed by the measures taken to accom-

modate the trade interests of the pharmaceutical industry (2002: 83).This suggests that some kind of compromise between the UKgovernment and Myriad on BRCA 1 and 2 gene testing is likely. Theownership rights of private capital may well take precedence overpatients rights to unlimited access to genetic services.

Discussion

Although todays situation is undoubtedly different from the eugenicsof the past, there are similarities that it would be wrong to ignore.The discourse of individual rights did not feature prominently in the




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early days of eugenics, but the emphasis upon personal responsibility

for the prevention of genetic disease is not new. Early eugenicist

campaigners also placed considerable emphasis upon educating the

public about hereditary diseases and upon cooperating with geneticfieldworkers by sharing details of their pedigree in the public interest,

just as todays genetic researchers emphasize the importance of

learning about genetics and providing genetic material for research.

The private sector has an important role in contemporary genetics

which alters the relationships between the state and the public from

those of the past. The technologies of genetic screening and prediction

are undoubtedly more powerful, but professionals responsibilities for

the public good remain intact. Early eugenicist campaigners includedacademics, progressives, scientists, social workers and doctors, all of

whom saw themselves as responsible for promoting genetic health and

social progress. Although the tone and aims of todays professionals

have changed, their sense of social responsibility for ethical genetic

practices remains.

The rights and responsibilities of professionals, patients, private

companies and members of the public with respect to genetic testing,

donation and regulation are undoubtedly wideranging and complex.It would be reductive to interpret all of these various rights and

responsibilities as a form of eugenics. But it would also be nave to

assume that the tensions between them mean that present relation-

ships between professionals, patients, publics and genetic diseases are

fundamentally different from those of the past. Patient rights are not

a simple antidote to professional rights; nor, indeed, are professional

responsibilities. Instead, patients rights to access genetic testing and

professionals responsibilities for ethical practice can support, ratherthan simply undermine, the prevention of genetic disease. Profes-

sionals are not a homogeneous group, expressing different interests in

relation to particular tests and regulatory frameworks, depending on

their specialist knowledge, institutional affiliations and political con-

victions. Tensions between them might undermine genetic services,

but this is not inevitable, as particular alliances might emerge to

foster their development. Similarly, private rights to ownership of

gene technologies may counter the proliferation of genetic screening

technologies, but some representatives of the private and public

sectors have shared interests in disease prevention that could expand

their provision.




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Rights and responsibilities with respect to genetics in the clinicaland policy arenas are distributed on the basis on peoples perceivedcontributions to society, and contributions on the basis of scientificand medical expertise and capital are still highly valued in contrast tothose based on lived experiences of disease and disability, reproductiveand caring labour and community involvement. Contemporary policymaking about genetics is dependent upon technical expertise, andmembers of the public are not considered to be sufficiently competentto make a significant contribution to this process. Their rights in thisarena are therefore limited, but their responsibilities for self-educationand self-surveillance remain.

It would be premature to suggest a new model of genetic

citizenship to which society should aspire, given that many questionsremain about the ways in which the rights and responsibilities ofmembers of the public, professionals, patients and private capital aredefined and distributed in the different contexts of genetic research,services and regulations. Individuals and groups will no doubtconceptualize these rights and responsibilities differently according totheir particular life course and social circumstances, and there is aneed to identify the key themes in these frameworks and how they are

produced. The ways in which these different frameworks interact andshape actual decisions about genetic testing and policy making alsoneed to be investigated. In any such study, continuities between pastand present forms of genetic citizenship should be explored alongsideits transformations.

Acknowledgements

I gratefully acknowledge the help of Tony Fitzpatrick, Norman Ginsburgand the anonymous referees, as well as comments given by colleagues onearlier versions of this article, which was presented at the Centre for FamilyResearch, University of Cambridge and University College Northampton (aspart of the ESRC seminar series on Citizenship and its Futures). Thanks alsoto Richard Tutton and Sarah Cunningham-Burley.

Notes

1. For some examples where this is not the case, see Burke and Kolker(1994), Cunningham-Burley and Kerr (1999), Hallowell (1999a, b),




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Anne Kerr is a lecturer in the department of sociology at the University

of York, with specialist interests in genetics and gender. She has authored

and co-authored a number of articles on professional and public accounts of

genetics. Her most recent publication, Genetic Politics: From Eugenics to

Genome, was written with Tom Shakespeare (New Clarion Press, 2002). She




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is currently working on an ESRC-funded project entitled Transformations in

Genetic Subjecthood (see: http://www.york.ac.uk/res/tigs). Address: Depart-

ment of Sociology, University of York, York YO10 5DD, UK. email:

[email protected]


Documents

Rights and Responsibilities in the New Genetics Era