Genetic discrimination: the need for legislation

Those who have been arguing for the introduction of legislation to prohibit genetic discrimination in the UK received encouragement recently with the news that both US Houses of Congress had passed identical bills prohibiting such discrimination in the field of health insurance and employment. Known as the Genetic Information Nondiscrimination Act of 2008 (GINA), this Act has been hailed as the first major civil rights legislation of the 21st century, and now awaits signature by President Bush to become law. The UK government, by contrast, has shown greater caution in legislating with regard to a problem that is not widely appreciated at present but will become of increasing importance in future years.

Genetic testing and discrimination

As a result of remarkable advances in genetic research in the past decade, not only can many illnesses be diagnosed at a much earlier stage than was previously possible, but scientists can identify gene mutations that increase a person's chances of developing disorders with a genetic basis, such as breast and bowel cancer, and so assess the risk of a disease occurring (see, for example, NHS Genetic Testing: Postnote, Parliamentary Office of Science and Technology, July 2004, No 227). Although, for many conditions, the accuracy of the prediction '“ as to whether and, if so, when an illness will occur '“ may be imprecise, testing has many benefits to the individual, from being able to detect and treat an illness early to allowing him or her to make informed decisions about future healthcare.

It is clearly in the interests of individuals to be able to take relevant genetic tests freely and not to be discouraged from doing so for fear that the results will be disclosed to others, such as insurance companies and employers, who may use them to their disadvantage. For example, insurance companies might use the results of a test which shows that a person has a particular disease, or a genetic predisposition to a particular medical condition, either to deny cover altogether or to increase premiums. Likewise, employers might use them to refuse to employ a person, or dismiss or otherwise discriminate against an employee in the terms and conditions of employment. Both insurers and employers might require individuals to take such tests and penalise them if they refused to do so. At present there is no law preventing such discrimination in the UK.

International legislation

A number of international agreements have taken a stand against genetic discrimination. In Europe, art 11 of the Convention on Human Rights and Biomedicine prohibits 'any form of discrimination against a person on grounds of his or her genetic heritage', and art 21 of the Charter of Fundamental Rights lists discrimination based on 'genetic features' along with other prohibited discriminatory grounds, such as sex and race. In the UN, art 6 of the Universal Declaration on the Human Genome and Human Rights (UNESCO 1997) bans discrimination based on 'genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity'.

Many countries in the EU have legislated against genetic discrimination, some by using data protection laws, while others, notably, France, Spain, Finland, Austria and Slovenia, have done so by means of equality legislation. The latter, more direct, route was the one taken in the US. Under the GINA, employers will be prohibited from using any type of genetic information to discriminate against an employee, whether by failing or refusing to hire, or discharging, or otherwise discriminating against him or her with respect to the compensation, terms, conditions, or privileges of employment. Similar prohibitions apply to employment agencies and labour organisations. The ban applies to the acquisition, as well as the use, of genetic information. With regard to insurance, the GINA is limited to health insurance and applies to both individual and group policies. It prevents insurance providers requesting, requiring or using genetic information as a criterion for eligibility for health insurance policies or for increasing premiums or contributions.

Preventing discrimination in the UK

(a) Insurance industry moratorium

In 2001 the government and the Association of British Insurers agreed a Concordat and Moratorium on Genetics and Insurance whereby insurers undertook not to use information from predictive genetic test results, or to require customers to disclose such results, except in specific high-value cases approved by the Genetics and Insurance Committee (GAIC), a non-statutory advisory body reporting to the Department of Health.

This moratorium has been extended to 2011. So far the only tests approved by the GAIC are for Huntington's disease in respect of life insurance policies valued at more than £500,000.

(b) The approach of the UK government

The UK government proposes to introduce a Single Equality Bill in the 2008-09 session of Parliament, designed to bring all existing discrimination legislation within one statute.

In June 2007 the Department for Communities and Local Government published a

consultation document, A Framework for a Fairer Future: Proposals for a Single Equality Bill for Great Britain, in which it considered, inter alia, whether there was justification for legislating to prohibit discrimination on grounds of 'genetic predisposition', that is where there is, as a result of genetic testing, 'an increased likelihood of developing a health condition in the future'.

Although it acknowledged the concern that people with a genetic predisposition might be discriminated against by employers and insurers, and accepted that nobody should be unfairly discriminated against on the basis of their genetic characteristics, it concluded that there is no need for legislation at present.

Its reasons were that (a) employer-driven genetic testing is not presently occurring in the UK; (b) the use of genetic data is subject to the Data Protection Act, and specific advice given by the Information Commissioner; (c) the Concordat and Moratorium in the insurance industry is working effectively; and (d) there is little, if any, evidence of discrimination against those with a genetic predisposition, or that genetic testing is being used in a way which would give rise to discrimination. It preferred to wait and see whether legislative or non-legislative measures should be adopted 'as and when justified by the emergence of any discriminatory practices in this area'.

(c) The case for legislation

In their responses to the consultation document, made in September and August 2007 respectively, the Human Genetics Commission (HGC), which advises the government on scientific advances in genetics, and in particular on their ethical, legal and social implications, and GeneWatch UK, a not-for-profit policy research and public interest group, both argued for immediate legislation.

The HGC referred to anecdotal evidence of discrimination against people on genetic grounds by requiring them to disclose genetic information or putting pressure on them to take genetic tests, and of people being discouraged from taking tests or participating in research for fear that the results would be used to their disadvantage.

Although it acknowledged that evidence of actual harms had not been collected systematically, it stated that evidence of genetic discrimination is difficult to gather, given the relative rarity of significant genetic conditions and the sensitivity of information about them. It noted further that discriminatory treatment also arises from a confused perception of genetic conditions, and from a 'significant ignorance or misunderstanding of genetic conditions, particularly in the context of insurance underwriting'.

The HGC agreed with the government in rejecting the idea that genetic discrimination should be dealt with as part of existing disability discrimination legislation, as this 'would change the nature of disability discrimination and risk being seen as a dilution of disabled people's rights'. Noting, however, that people with HIV and cancer were recently brought within the protection of the Disability Discrimination Act 1995 (Sch 1 para 6A), so that they are classed as having disabilities from the date of diagnosis, even though they are not exhibiting symptoms of their illnesses, the HGC made the cogent point that there are equally good reasons for giving protection to those people who are diagnosed as having highly-penetrant, late-onset genetic conditions, such as Huntington's disease and a genetic predisposition to breast and colon cancers. As a matter of principle, it argued, there should be no difference between the legal protection given to people diagnosed with serious genetic disorders and those who have been diagnosed presymptomatically with serious diseases that are either acquired or occur spontaneously. It noted, however, that discrimination can occur even where genetic conditions are not highly-penetrant (such as where there is not a high probability that those with the gene will develop the disorder), or even medically serious. But, rather than attempt to draw arbitrary distinctions between those who are protected and those who are not, based on the seriousness of the condition in question, the HGC concluded that it would be 'far better to offer protection from discrimination on any genetic grounds'.

For its part, GeneWatch UK made a forthright appeal for legislation to prevent discrimination by employers and insurers, and annexed to its response a Joint Statement of Concern Regarding Genetic Testing in the Workplace, a document drawn up in 2006 in which GeneWatch led a coalition of 42 concerned groups and individuals in urging the government to take such action. In addition to the basic points raised in favour of legislation, which were essentially the same as those made by the HGC, GeneWatch stressed the unfairness of discriminating against people on the basis of genetic factors, over which they have no control. It argued the insurance industry's moratorium was not sufficient protection to prevent discrimination in the future, and highlighted the danger that genetic screening of employees in the workplace 'could become a damaging alternative to reducing workplace hazards, or be used to try to cut employers' pension or insurance costs'.

Consequences of delay

The announcement by equalities minister Harriet Harman on 26 June concerning the government's proposals for the Single Equality Bill suggests that the government does not intend to legislate at this stage. This is unfortunate for the Bill would provide an excellent opportunity for the government to grasp the nettle and take pre-emptive action to prohibit genetic discrimination. The fact that there has been no systematic collection of discriminatory evidence should not be a barrier to legislation for, as the HGC noted, the absence of such evidence did not prevent legislation being introduced to deal with gender and disability discrimination, both of which were, as a result, 'significantly under-recognised' prior to its enactment.

There are powerful arguments for taking action now, rather than later. As medical science continues to advance in the field of genetics, and as public awareness of the importance and value of genetic testing becomes greater, there will inevitably be a concomitant increase in the opportunities for discrimination by employers and insurers.

Those who are closest to the problem, such as the HGC and GeneWatch and the groups which signed the Joint Statement in 2006, are in no doubt that the only satisfactory way to prevent discrimination occurring, and to allay the public's fear of discrimination in the use of genetic testing, is to introduce legislation banning it now. As it seems inevitable that legislation will be introduced eventually, bringing the position in the UK into line with that in other jurisdictions, it would be regrettable if this were only done at some future stage on the back of an increasing number of people being disadvantaged in the interim.