Studies in Ethics, Law, and Technology
    Volume 3, Issue 1 2009 Article 3
    
    E THICAL , L EGAL AND T ECHNOLOGICAL A SPECTS OF H EALTH I NFORMATION M ANAGEMENT
    
    The Single Equality Bill: A Missed Opportunity to Legislate on Genetic Discrimination?
    Ruth H. Wilkinson∗
    
    ∗
    
    University of Manchester, ruthwilkinson26@hotmail.com
    
    Copyright c 2009 The Berkeley Electronic Press. All rights reserved.
    
    The Single Equality Bill: A Missed Opportunity to Legislate on Genetic Discrimination?∗
    Ruth H. Wilkinson
    
    Abstract
    In this paper I consider the recent review of the discrimination law of England and Wales. The Discrimination Law Review published its final report, “Framework for a Fairer Future,” in 2008. The report advocated a complete overhaul of the discrimination law in England and Wales, creating a single duty to promote equality. Although many of the consultees had argued that genetic discrimination should be included in the grounds of discrimination, the Discrimination Law Review team and the government have since decided to exclude it from the proposed Single Equality Bill. In this paper I analyse the reasons given for this decision, and argue that this was a missed opportunity to deal with a problem which will only get worse in the future. KEYWORDS: genetic discrimination, genetic testing, insurance, law, ethics
    
    ∗
    
    I would like to thank Professor John Birds for discussion of the issues. This work has been funded by the Arts and Humanities Research Council.
    
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    Introduction In February 2005, Jacqui Smith1 and David Miliband2 announced a “root and branch” review of discrimination and inequality in the UK.3 The Equalities Review published its consultation paper, The Equalities Review: Interim Report for Consultation, in March 2006.4 After a period of consultation, the final report, Fairness and Freedom: The Final Report of the Equalities Review, was published in February 2007.5 The Discrimination Law Review was also launched in February 2005.6 The two initiatives complemented each other. The Equalities Review focused on “societal and cultural causes of disadvantage and inequality”7 while the Discrimination Law Review was charged with finding “a clearer and more streamlined equality legislation framework”.8 The Discrimination Law Review published its consultation paper, A Framework for Fairness: Proposals for a Single Equality Bill for Great Britain, in June 2007.9 The final report, Framework for a Fairer Future – The Equality Bill, was published and laid before Parliament in June 2008.10 Despite a promising start, in that genetic discrimination was actually mentioned in the Equalities Review Interim Report, any hopes of seeing genetic discrimination addressed in the Single Equality Bill were dashed by the Government's Response11: We have decided not to extend protection against discrimination on the ground of genetic predisposition. We have recently agreed to the insurance
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    Then Equality Minister. Then Minister for the Cabinet Office. See “The Equalities Review” at http://archive.cabinetoffice.gov.uk/equalitiesreview/background.html [accessed 20 January 2009]. From: http://archive.cabinetoffice.gov.uk/equalitiesreview/publications.html [accessed 6 April 2009]. From: http://archive.cabinetoffice.gov.uk/equalitiesreview/publications.html [accessed 6 April 2009]. See “The Equality Bill” at http://www.equalities.gov.uk/equality_bill/introduction.aspx [accessed 20 January 2009]. Ibid. Ibid. From: http://www.communities.gov.uk/publications/communities/frameworkforfairnessconsultation [accessed 6 April 2009]. From: http://www.official-documents.gov.uk/document/cm74/7431/7431.asp [accessed 6 April 2009]. The Equality Bill – Government Response to the Consultation 2008 Cmnd 7454.
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    industry's proposal to extend until 2014 the existing arrangements for a voluntary moratorium on insurers' use of predictive genetic test results and consider that this, along with continued monitoring of the use of genetic testing in the UK, should provide sufficient reassurance.12 The Government gave reasons for its decision not to regulate: 1. there remains little hard evidence of a problem at present; 2. the moratorium appears to be working and has recently been extended to 2014; 3. it is not clear that discrimination law is the right route to deal with any problems that might now or in the future exist; 4. we would expect, along with the Human Genetics Commission, the Equality and Human Rights Commission to take an interest in this area, under its duty to keep the need for legislation under review, taking into account scientific advances and the effectiveness of non-legislative options.13 The Government further suggested that it was not concerned about the lack of specific regulation dealing with genetic discrimination since the Data Protection Act 1998 applies to the use of genetic information.14 I will address each of these reasons in turn, and conclude that the Government missed a valuable opportunity to deal with the problem of genetic discrimination.15 Little hard evidence of a problem The Government suggested that the question of whether to deal with genetic discrimination in the Single Equality Bill came down to the evidence. The argument put forward was that, “the anecdotal evidence provided by some respondents is not, in our view, persuasive and does not point to any systemic use of data in a discriminatory way.”16 It seems somewhat perverse that the Government requires there to be systemic discrimination on genetic grounds
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    Ibid, page 177. Ibid, page 182. Ibid, page 180. The Equality Bill was introduced into Parliament and had its first reading on 24 April 2009. As expected, it contained no provisions relating to genetic discrimination. The second reading was on 11 May 2009. As at 28 May 2009, the Bill was at the Committee stage in the House of Commons. See “Equality Bill 2008-09” at http://services.parliament.uk/bills/200809/equality.html for an update on the Bill's progress through Parliament. The Equality Bill – Government Response to the Consultation 2008 Cmnd 7454, page 182.
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    before considering a legislative response. Especially when one notes Ruth Kelly's17 foreword to A Framework for Fairness, where she stated that, “we have reached a situation where we want our institutions to work in a way which prevents unfairness happening in the first place”.18 These two positions seem to me to be incompatible. Furthermore, describing the evidence from consultees as “anecdotal” seems to belittle its importance. In 2007, the Genetic Interest Group19 carried out a survey of all its members, at the suggestion of the Human Genetics Commission Discrimination Monitoring Group.20 The responses to the survey21 show “a number of cases of serious and distressing discrimination against those with genetic conditions”22 and “a history of significant ignorance or misunderstanding of genetic conditions, particularly in the context of insurance underwriting”.23 Whilst it seems unlikely that this was a robust or scientifically valid survey, it is unnecessarily derogatory to describe and dismiss this evidence as anecdotal. It is lucky that, at the moment, genetic discrimination is not systemic or inherent in the UK, but the corollary of this is that it is not possible to show hard evidence of widespread discrimination. Ruth Kelly suggested that it would not be necessary. Amongst the consultees to Fairness and Freedom, there seems to be some consensus that genetic discrimination exists, although it is not as fully fledged as other forms of discrimination. There is some objection to the Government's view that genetic discrimination is something which need not be dealt with now: we also question the consultation paper's focus on finding existing evidence of actual genetic predisposition discrimination rather than heeding signs that genetic predisposition discrimination dangers are likely to grow significantly in prominence in the very near future, and that it already presents a 'real problem', particularly in terms of public concern.24
    
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    Then Secretary of State for Communities and Local Government. A Framework for Fairness, page 7. The Genetic Interest Group (GIG) is a national alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders. See their website: www.gig.org.uk. Human Genetics Commission's Response to the Discrimination Law Review from http://www.equalities.gov.uk/equality_bill/introduction.aspx Some of which are appended to GIG's response to the Discrimination Law Review, from http://www.equalities.gov.uk/equality_bill/introduction.aspx. Human Genetics Commission's Response to the Discrimination Law Review. Human Genetics Commission's Response to the Discrimination Law Review. Ethox Response to the Discrimination Law Review from http://www.equalities.gov.uk/equality_bill/introduction.aspx
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    The Human Genetics Commission also support this view, pointing out in their response that: “we recall ... that the existence of both gender and disability discrimination were significantly under-recognised prior to legislation owing to the fact that evidence had not been systematically collected”.25 Clearly, we now recognise that gender and disability discrimination are issues that it is appropriate for the state to address. However, it would have been a much easier ride if we had been able to recognise the size of the problem earlier. Heeding the anecdotal evidence put forward now might enable us to prevent genetic discrimination becoming the disability discrimination of the 21st century. In their response, the Human Genetics Commission26 expressly identify evidence which suggests that genetic discrimination is something to be concerned about now. They argue that the existence of the UK's moratorium on the use of genetic test information by insurance companies, and of foreign and international legal measures show that there is concern about genetic discrimination at the highest levels of policy-making. The Human Genetics Commission identify a number of countries with legislation prohibiting genetic discrimination27 and also note the existence of the US Genetic Information Nondiscrimination Bill. Since then, the Genetic Information Nondiscrimination Act has been signed by then President Bush, and the provisions should be in force by the middle of 2009.28 It is also worth noting the existence of legislation in Belgium which prohibits insurers asking for or using genetic information in relation to any insurance products.29 With regards to international instruments, the Human Genetics Commission specifically note the Biomedicine Convention,30 the Universal Declaration on the Human Genome and Human Rights31 and the Charter of Fundamental Rights of the European Union.32 Article 11 of the Biomedicine Convention prohibits discrimination on the basis of genetic heritage. Article 6 of
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    Human Genetics Commission's Response to the Discrimination Law Review. Human Genetics Commission's Response to the Discrimination Law Review. They expressly identify: Germany, Slovenia, Spain, Russia, France, Sweden, Finland, Austria, The Netherlands, Luxembourg, Greece and Italy. See President Bush Signs Landmark Genetic Nondiscrimination Information Act Into Law at http://www.sciencedaily.com/releases/2008/05/080526152654.htm [accessed 26 January 2009]. GINA 2008 came into force on 21 May 2009, see Genetic anti-discrimination law starts Thursday at http://www.forbes.com/feeds/ap/2009/05/20/ap6448494.html [accessed 28 May 2009]. Van Hoyweghen, I., Horstman, K., Schepers, R. “Genetic 'risk carriers' and lifestyle 'risk takers'. Which risks deserve our legal protection in insurance?” (2007) 15 Health Care Analysis 179. Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (Council of Europe, 1997). (UNESCO, 1997). ([2000] O.J.E.U. C364).
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    the Declaration on the Human Genome prohibits discrimination on the basis of genetic characteristics, and Article 21 of the EU Charter prohibits discrimination on the basis of genetic features. Whilst it can be argued that there are problems with the way that these documents are framed, in that there is a lack of specificity about the content of the prohibitions of genetic discrimination,33 their existence supports the Human Genetics Commission's argument that genetic discrimination is something that is worried about, and has been since the early to mid-1990s. The Human Genetics Commission also highlight the increasing weight of jurisprudence from other jurisdictions which shows that genetic discrimination is occurring in a real and serious way.34 These cases are primarily US based, and include situations where employers had been carrying out surreptitious testing of employees, young healthy children had been denied health insurance on the basis of genetic tests, and people who had been refused jobs because of genetic risks which had been uncovered in the pre-employment medical examination. The US example offers some predictions about the potential experience in the UK. Genetic discrimination has developed very quickly, and it is possible to infer from this something about the way that genetic discrimination might develop if left unchecked in the UK. The Human Genetics Commission identify the Australian Genetic Discrimination Project35 as further evidence of problems. The team, headed by Margaret Otlowski and based at the University of Tasmania and the University of Queensland, investigated the incidence of genetic discrimination in Australia between 2002 and 2005, and are currently writing the major reports from the research project. The preliminary results indicate that genetic discrimination is prevalent, and “remains an issue of clinical, social and legal significance”36 which needs to be addressed. The team reference a similar, although much smaller project carried out in the UK by Lawrence Low, Suzanne King and Tom Wilkie, in the early 1990s, which surveyed the perceptions and experiences of genetic discrimination of members of genetics support groups, compared to the ordinary population.37 One of the main conclusions from this paper was that genetic discrimination needed to be researched carefully and more extensively to establish a clearer picture of its prevalence. The study also showed
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    34 35 36
    
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    This is not a debate which I intend to address here. For further discussion see: Roscam Abbing, H. “The Convention of Human Rights and Biomedicine. An Appraisal of the Council of Europe Convention” (1998) European Journal of Health Law 377. Human Genetics Commission's Response to the Discrimination Law Review. http://www.gdproject.org/ [accessed 6 April 2009]. Taylor, S., Treloar, S., Barlow-Stewart, K., Stranger, M., Otlowski, M. “Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients” (2008) 74 Clinical Genetics 20, 28. Low, L., King, S., Wilkie, T. “Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom” (1998) 317 British Medical Journal 1632.
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    that, even in the early 1990s, there was a higher proportion of people with genetic predispositions being refused insurance than in the general population. Those who were refused insurance presented no adverse risk on actuarial grounds.38 It cannot be argued that refusal of insurance in these cases was actuarially justified. Therefore it is possible to conclude that this was unjustifiable discrimination on the basis of genetic predisposition. Whilst it may be the case that there is not enough hard evidence of a current problem to compel the Government to mount a legislative response, I would argue that this brief survey shows that genetic discrimination does exist already. These are signs that there is a problem at the moment, although it is not yet fully fledged. However, I would argue that this evidence is still reasonably weighty and should go some way to show that legislation to address genetic discrimination is necessary now. Whilst most of this is centred on other jurisdictions, it does not mean that there is no genetic discrimination in the UK. The moratorium is working and has recently been extended It is certainly true that the moratorium on the use of genetic information by the insurance industry39 has been extended. It will expire in 2014.40 However, it is questionable whether it is working. The Ethox Centre41 argued in their response that, relying on a voluntary, non-legally binding Concordat system (and nonbinding guidelines or 'recommendations' such as those issued by the Information Commissioner) is unlikely to provide an adequate response that will command public trust and confidence for very much longer.42 I would suggest that public trust and confidence in the moratorium is already waning. Paul Bennett and Susan Smith established a citizen's jury in 2004 to look at the issues relating to genetic information and insurance.43 The jury were
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    Ibid, page 1634. HM Government and the Association of British Insurers, Concordat and moratorium on genetics and insurance. (2005) Association of British Insurers. Association of British Insurers, Press Release reference 39/08, 13 June 2008. Available at http://www.abi.org.uk/Newsreleases/viewNewsRelease.asp?nrid=16274 [accessed 26 September 2008]. The Ethox Centre at www.ethox.org.uk [accessed 6 April 2009]. Ethox Response to the Discrimination Law Review. Bennett, P., Smith, S. J. “Genetics, insurance and participation: How a citizens' jury reached its verdict” (2007) Social Science and Medicine 2487. A citizen's jury was convened in 2004 and asked to consider how the state should deal with the issue of genetic information in the context of insurance. After three days of education from both sides to the debate, they decided that
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    asked to consider the options available to the Government to deal with the situation after the moratorium had expired. The jury were clearly unimpressed with the continuation of the moratorium, and their confidence in the protection offered was lowered when they realised that very little progress had been made towards a solution to the problem of genetic tests and insurance throughout its lifetime.44 One of the main justifications for this approach was that it would give the industry time to find a solution. It is safe to argue that Bennett and Smith's study indicates that, even in 2004, the public were already somewhat unconvinced by the continuation of the moratorium. There will come a point in time where the UK has to act decisively to deal with this issue. I suspect that by 2014, public sympathy will have waned even more, and that it is unlikely that continuing the moratorium would be welcomed with open arms. The most pressing concern about the continuation of the moratorium is the 'test now, buy later' problem. The Human Genetics Commission argue45 that the moratorium puts those thinking about undergoing testing in a very difficult position. People who undergo testing now, with the protection of the moratorium, do not know if they will be required to disclose the results when they buy insurance products in the future. The most difficult problem is that there is no guarantee that the insurance industry will not institute a retrospective rule when the moratorium has ended. It may be the case that insurance companies will ask whether their clients have ever had predictive genetic tests and then use the information gained to set premiums. This would sweep away any protection previously offered by the moratorium.46 The burden is heaviest on young adults who may wish to know, but cannot buy all the necessary financial products now. They run the risk of being denied insurance later, or being priced out of the market, because they relied in good faith on the assurances of the insurance industry. There is already anecdotal evidence that patients are advised to avoid undergoing testing until they have bought all the insurance products they need. A member of the Human Genetics Commission consultative panel made this comment in response to a consultation exercise: I have become aware of a case involving a serious late onset disorder genetic condition other than haemochromatosis in which the consultant
    legislation prohibiting insurers' access to genetic information was the most appropriate course of action. There has been a moratorium in the UK since 2001. Human Genetics Commission's Response to the Discrimination Law Review. Professor David Johns discussed the test now buy later problem in his evidence to the Science and Technology Select Committee, Sub-Committee 2 inquiry into genomic medicine, being carried out at the moment. The final report is due to be published in 2009. http://www.parliament.uk/parliamentary_committees/lords_s_t_select/genomic.cfm [accessed 27 January 2009].
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    advises family members to defer taking a genetic test to establish whether they are at risk until they have reached the stage of life when they have taken out whatever long term insurance they are likely to need.47 Whilst it could be argued that this approach goes against the ethos of the moratorium, which is intended to enable individuals to undergo testing, it is also arguable that it is the uncertainty of the moratorium which has caused this attitude. This is the problem with relying on a voluntary moratorium. It is inherently unreliable. During the lifetime of a moratorium, it is up to the whim of the individual insurance company whether to conform to the provisions, while the length of the moratorium is at the whim of the industry. Until there is legislation to introduce certainty into the question of undergoing testing, everyone who is tested now without having sewn up their finances runs the risk of facing serious disadvantage in the future. As the moratorium continues, this group of people increases. It is unclear how long it is fair to keep these people dangling. Is discrimination law the right solution anyway?48 One of the main purposes of the Discrimination Law Review was to engender consistency, coherence and simplicity in the UK's approach to discrimination law. In her introduction to Framework for a Fairer Future, Harriet Harman49 explained that in the UK “there are currently50 nine major pieces of discrimination legislation, around 100 statutory instruments setting out connected rules and regulations and more than 2,500 pages of guidance and statutory codes of practice”.51 The Single Equality Bill is intended to do away with these levels of complexity. Irrespective of the question of whether having a single Act will reduce the complexity of the law, failing to include genetic discrimination in the Single Equality Bill seems to go against the stated aim of simplification. The Ethox Centre summed it up perfectly: Instead of simplifying the law and enhancing its clarity and coherence, maintaining a separate, parallel, non-binding, non-legislative regulatory structure for this one form of discrimination seems likely to add an extra,
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    Human Genetics Commission's Response to the Discrimination Law Review. I do not propose to address the broad question of whether the discrimination law approach is appropriate to deal with genetic discrimination. For a good discussion of this issue, see: Wolf, S. “Beyond 'Genetic Discrimination': Towards the broader harm of geneticism” (1995) 23 Journal of Law, Medicine & Ethics 345. Instead, I address the inconsistencies in the Government's approach to the question of discrimination legislation. Then Leader of the House of Commons. As at June 2008. Framework for a Fairer Future, page 8.
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    unnecessary and undesirable layer of complexity, obfuscation and confusion, and to perpetuate a source of potential inconsistency and incoherence.52 If we accept that disadvantageous treatment on the basis of genetic information amounts to unjustifiable discrimination then, in order to encourage consistency, it should be dealt with at the same time, in the same legal instrument as the other more widely recognised forms of discrimination. Furthermore, if the UK wants a single, coherent approach to discrimination law wholesale, which is what was intimated by the Equalities Review and the Discrimination Law Review, then it is short-sighted to exclude genetic discrimination on the basis that it is not yet a serious enough problem to deal with. Furthermore, whilst it is true that Framework for a Fairer Future moves away from the current patchwork approach to discrimination law evidenced by the nine statutes and 100 statutory instruments, it does not seek to homogenise the whole of discrimination law. It is possible to achieve a simple and coherent system without requiring a 'one size fits all' rule.53 This is explicitly recognised in the proposals for the Equality Bill. The Bill will impose a new Equality Duty on public authorities. It will require them to tackle inequality in relation to race, disability and gender, as well as gender reassignment, sexual orientation, age and religion or belief. However, it is also recognised that age is a difficult ground to deal with, so the Bill will include special provisions aimed at preventing age discrimination in the provision of goods and services. If one ground of discrimination can be dealt with separately within the same piece of legislation, then it is not obvious why a second ground of discrimination cannot also be dealt with separately, even if it is not considered appropriate to include it within the general duty to promote equality. I would argue that there are good reasons why it is not appropriate to include genetic discrimination in the general duty to promote equality. As the evidence presented by the Human Genetics Commission shows, discrimination on the grounds of genetic predisposition is not yet entrenched. It could be argued that treating it in the same way as the more pervasive forms of discrimination, such as on the grounds of disability, gender or race, is disproportionate. Since this form of discrimination has not yet taken root, it should not be treated as if it had. To include it in the general duty could be interpreted as using a sledge hammer to
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    Ethox Response to the Discrimination Law Review. In a common law jurisdiction, there is considerable value in having different rules for different issues. Any general rule will be narrowed down by the courts when they apply the laws to cases before them, and overnight the law becomes complex and incoherent. This is a general criticism of the Bill itself, which I do not intend to address in any more detail. My thanks to Mike Gordon for discussion of this idea.
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    crack a nut. Clearly, nutcrackers, or rather, some legal provisions specific to the issue, would be much more appropriate. Furthermore, treating genetic discrimination in the same way as these more widely recognised forms of discrimination could cause it to be viewed in the same way as the more virulent forms of discrimination, escalating the problem. Treating genetic discrimination as an entrenched problem may act as a self-fulfilling prophecy. In a sense it tacitly approves and then encourages discriminatory practices. I would argue that, in order to prevent genetic discrimination becoming an insidious problem it is important to recognise that it is not as significant as racism, or sexism for example, and that careful legislation at this stage could nip its development in the bud now. A second reason for treating genetic discrimination separately is that the issues involved are different from those in other forms of discrimination. For example, a person with a genetic predisposition is not at the same disadvantage as someone with a physical disability. The person with a predisposition does not need the same sorts of legal assistance as the physically disabled person. Genetic predispositions are hidden, so the potential for discrimination only really occurs when someone is required to disclose that they have one. This limits the opportunity for discrimination to occur to situations involving the provision of goods and services: access to insurance and other financial products, and access to healthcare, for example. The issue is whether someone should be denied, or have restricted access to, a product like life insurance on the basis of a technically relevant characteristic, but one which he has no control over and may not eventuate at all. It is similar to age, in that one has no control over how fast she ages.54 It is legitimate to deal with age discrimination in a different way to disability or race discrimination, because the issues are different. The difference between old and young is not always simple to define, and age has traditionally been seen as a legitimate basis of choice between people, especially in the contexts of employment and insurance.55 It can be argued that these problems occur with other types of discrimination as well – for example, it has been difficult to define impairment, and disability has in the past been considered a legitimate basis for employment and insurance decisions. In the context of the Single Equality Bill, I think the important comparison is between age or genetic discrimination 'now' with disability discrimination 'now', rather than genetic discrimination 'now' with disability discrimination 'then'. Both age and genetic discrimination are younger forms of discrimination, and this is one reason why the issues raised by age discrimination now are different from the issues raised by disability discrimination now. The arguments made about genetic discrimination are similar to those that are made in relation to age discrimination. It is not easy to
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    Despite the claims made by manufacturers of miracle anti-aging creams. Fredman, S. Discrimination Law (2002) Oxford University Press, Oxford, page 59.
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    identify those with genetic predispositions. It is already difficult to define the membership of the group, and as research into genetics continues, this group will get larger and less definable. Yet, with both of these groups, the burden of their increasing age or genetic makeup is disproportionately weighted against them. This takes me back to the argument made above. If it is legitimate to include separate provisions dealing with age discrimination on the basis that it raises different issues, and genetic discrimination raises similar issues to age discrimination, then it is not illegitimate to include separate provisions addressing genetic discrimination in the Bill. As well as the obvious advantage of dealing with genetic discrimination now, that those already suffering will be protected, there is also a symbolic advantage to sorting out the law before genetic discrimination becomes entrenched. In A Framework for Fairness, it was suggested that: Equality is a fundamental part of a fair society in which everyone can have the best possible chance to succeed in life. There is a clear moral imperative for this – there is no place in 21st century Britain for homophobia, racism and other aspects of discrimination which can destroy lives, poison communities and weaken the fabric of our national life. We all want to live in a society where everyone's rights are properly respected. These are basic decent values in our democratic society.56 Legislating against genetic discrimination before it becomes a norm we have to retreat from, sends out a strong message that equality is important. It suggests that we will protect the currently small group who are shouldering all the burdens of their genetic predispositions. It also says to the world that we have decided that genetic discrimination is wrong. By flying our colours now, we may be able to encourage the rest of the world that genetic discrimination is something worth addressing, and that it is worth addressing before it becomes too big to handle. In addition, decisive action will foster a culture of tolerance. This will work in tandem with legal change to prevent genetic discrimination becoming something that we need to be worried about: A cultural change towards a society that is less tolerant of all forms of discrimination and inequity will help to prevent a shift towards genetic discrimination in the future.57
    
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    A Framework for Fairness, page 8. Human Genetics Commission's response to the Equalities Review, from: http://www.hgc.gov.uk/Client/library_category.asp?CategoryId=4 [accessed 6 April 2009].
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    Finally, in relation to symbolism, there may be negative connotations to the decision not to address genetic discrimination now. Ethox suggest that: it would send out the message that genetic predisposition discrimination is not as 'unacceptable' as other forms of discrimination.58 and could well undermine respect for the rights and dignity of people who suffer from genetic predispositions to diseases or disorders.59 If this is the case then it would seem sensible to avoid it. Sending the message that genetic discrimination is not something that we need to worry about, despite the concerns of organisations such as the Human Genetics Commission, the Genetics and Insurance Committee, and the Genetic Interest Group, shows tacit approval of potentially discriminatory practices. It may encourage a culture which allows genetic discrimination to go on unchallenged. As these attitudes become the norm, they become more and more difficult to deal with. It is not clear therefore that discrimination law is inappropriate to deal with genetic discrimination. Notwithstanding this, if we decide to apply discrimination law, then it needs to be done with some care. One option considered in A Framework for Fairness was to bring genetic discrimination into disability discrimination.60 This would require a widening of the definition of disability so that it could include having a genetic predisposition to an illness. Clearly there are significant problems with characterising a genetic predisposition as a disability, not least the dilution of the existing definition of disability and potentially the rights of the disabled community. For this reason the Discrimination Law Review dismissed this option for reform, as had the Human Genetics Commission previously.61 There are good reasons why it would not be appropriate to conflate genetic discrimination with disability discrimination. As yet, genetic discrimination is not nearly as serious a problem as disability discrimination. Amalgamating the two could downgrade the importance of disability discrimination measures to the level of genetic discrimination. It could seriously undermine the work done by disability rights groups, and might also hamper the further protection of the rights of the disabled community. I would hope that it is apparent that this method of applying discrimination law to genetic discrimination has its problems. However, it does not seem to justify the
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    Ethox Response to the Discrimination Law Review. Ethox Response to the Discrimination Law Review. A Framework for Fairness, page 133. A Framework for fairness, page 133 para 8.28.
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    conclusion that discrimination law itself is inappropriate. If we accept that genetic discrimination is discrimination, and that it is something we should be addressing, then discrimination law seems to be the logical route to deal with the problem. Continued monitoring of the situation In its response, the Government argued that the continued monitoring of genetic discrimination generally by the Human Genetics Commission and the Equality and Human Rights Commission removes the necessity to legislate on the issue.62 At some level this is an attractive position. The situation will continue to be monitored, the Human Genetics Commission will consider different ways to deal with any problems which arise, and a finger is kept on the button. However, the Human Genetics Commission specifically said in their response to A Framework for Fairness that legislation is needed now: There is anecdotal evidence of genetic discrimination, which constitutes an adequate justification for legislating now to prohibit genetic discrimination; furthermore, there are reasons to believe that opportunities for genetic discrimination will increase. We agree with the approach outlined by Ruth Kelly in her introduction to the consultation that discrimination should be tackled pre-emptively 'rather than addressing it after the event'.63 It is good that the Human Genetics Commission will continue to monitor the situation. However, this arrangement only has any value if their recommendations are recognised and acted upon. There seems very little point to establishing a monitoring committee, and praising them for their continued work, if their recommendations and concerns are dismissed. Furthermore, this dismissal of the results of the Human Genetics Commission's monitoring makes the Equality and Human Rights Commission's new monitoring role seem somewhat superfluous. Although it is advantageous to have a second set of eyes on the problem, it is not apparent that the Government will be any more sympathetic to their concerns than they were to those of the Human Genetics Commission. The Data Protection Act 1998 offers enough protection The Government argued in its response to the proposals for the Single Equality Bill that although “there is currently no protection against discrimination on grounds of genetic predisposition, the use of genetic data is subject to the Data
    62 63
    
    The Equality Bill – Government Response to the Consultation 2008 Cmnd 7454. Human Genetics Commission's Response to the Discrimination Law Review.
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    Protection Act”.64 This was presented as a sufficient justification for the decision not to address genetic discrimination in the proposed reforms. However, it is not entirely clear that this is adequate to justify the decision not to legislate. The Data Protection Act 1998 applies to the collection of all personal and sensitive personal data.65 In that respect then, there is some level of protection for individuals who might be asked to disclose genetic information in an insurance or employment context. The principles of data protection66 require that any information collected from an individual is adequate, relevant and not excessive for the purpose of its collection. In many cases this will be sufficient. It protects individuals from having to disclose unnecessary or irrelevant personal information, and it provides a remedy if an organisation tries to collect information which breaches these rules. However, it is not clear that these rules will protect an individual from genetic discrimination in situations which are not entirely clear-cut. The biggest difficulty with genetic discrimination is that there are strong arguments being made on both sides. Strictly, genetic information is relevant to the decision to offer insurance and to the setting of premiums. An insurance company would consider it important to know the risk of a customer developing a condition after he purchases a policy. From one perspective, raising a premium to reflect the risk disclosed might be considered to be a proportionate response, but from another it might amount to unfair discrimination.6 7 The same applies in the case of employment. It is relevant to an employer that an employee might fall ill and be unable to work before they are due to retire. If that employee then loses their job on the basis of that information, it would most likely amount to unacceptable discrimination. In neither of these situations would the Data Protection Act 1998 have offered any assistance to the individual affected. It will only protect an individual if their information is being misused in some way. Until it is definitively established that using genetic test information in these ways is 'misuse' rather than use, it is not clear that the Data Protection Act offers any real protection. This change requires legislation.
    
    64 65 66 67
    
    The Equality Bill – Government Response to the Consultation 2008 Cmnd 7454, page 180. Genetic test information would certainly qualify as sensitive personal information, since it refers to the health of the individual: Section 2(e) Data Protection Act 1998. Data Protection Act 1998, Schedule 1. Holm, S. “Should genetic information be disclosed to insurers? - Yes” (2007) 334 British Medical Journal 1196; Ashcroft, R. “Should genetic information be disclosed to insurers? No.” (2007) 334 British Medical Journal 1197.
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    Conclusion There is no doubt that genetic discrimination is a difficult issue to address. It is not a traditional area of discrimination, and the situations in which it might arise are generally limited to access to goods and services, such as insurance and healthcare, and employment. It is unlikely that it will ever reach the extreme of social regulation on the basis of genetic makeup, as envisaged in the film GATTACA, for example. However, it does not follow that genetic discrimination is a non-issue, something that we should not be worrying about. Having explored the reasons given for not including genetic discrimination in the Single Equality Bill, I am far from convinced that they are strong enough to justify the decision not to legislate. I would argue that it is a short-sighted approach to exclude genetic discrimination from the Bill, and one which could cause considerable problems in the future. A single comprehensive approach to discrimination law is a lofty aim. Excluding genetics from the list seems to set it up to fail, before it has even been written. References: Ashcroft, R. “Should genetic information be disclosed to insurers? - No.” (2007) 334 British Medical Journal 1197 Bennett, P., Smith, S. J. “Genetics, insurance and participation: How a citizens' jury reached its verdict” (2007) Social Science and Medicine 2487 Charter of Fundamental Rights of the European Union, ([2000] O.J.E.U. C364) Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (Council of Europe, 1997). Discrimination Law Review, A Framework for Fairness: Proposals for a Single Equality Bill for Great Britain 2007 Discrimination Law Review, Framework for a Fairer Future – The Equality Bill 2008 Ethox Response to the Discrimination Law Review from http://www.equalities.gov.uk/equality_bill/introduction.aspx. Fredman, S. Discrimination Law (2002) Oxford University Press, Oxford
    
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    Genetic Interest Group's response to the Discrimination Law Review, from http://www.equalities.gov.uk/equality_bill/introduction.aspx. HM Government and the Association of British Insurers, Concordat and moratorium on genetics and insurance. (2005) Association of British Insurers HM Government, The Equality Bill – Government Response to the Consultation 2008 Cmnd 7454 Holm, S. “Should genetic information be disclosed to insurers? - Yes” (2007) 334 British Medical Journal 1196 Human Genetics Commission's Response to the Discrimination Law Review from http://www.equalities.gov.uk/equality_bill/introduction.aspx Low, L., King, S., Wilkie, T. “Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom” (1998) 317 British Medical Journal 1632 Roscam Abbing, H. “The Convention of Human Rights and Biomedicine. An Appraisal of the Council of Europe Convention” (1998) European Journal of Health Law 377 Taylor, S., Treloar, S., Barlow-Stewart, K., Stranger, M., Otlowski, M. “Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients” (2008) 74 Clinical Genetics 20 The Equalities Review, Equalities Review 2007 Fairness and Freedom: The Final Report of the
    
    The Equalities Review, The Equalities Review: Interim Report for Consultation 2006 Universal Declaration on the Human Genome and Human Rights, UNESCO 1997 Van Hoyweghen, I., Horstman, K., Schepers, R. “Genetic 'risk carriers' and lifestyle 'risk takers'. Which risks deserve our legal protection in insurance?” (2007) 15 Health Care Analysis 179. Wolf, S. “Beyond 'Genetic Discrimination': Towards the broader harm of geneticism” (1995) 23 Journal of Law, Medicine & Ethics 345
    
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