Should we outlaw genetic discrimination?
9 May 2012
The late US law Professor Paul Miller reflected recently that Beethoven, Stephen Hawking and Elton John were examples of individuals whom, if they had been tested for serious genetic conditions at the start of their careers, may have been denied employment in the fields in which they later came to excel.
Earlier this month the Association of British Insurers announced the latest extension on the moratorium on the use of genetic test results for insurance purposes. But is this “Concordat” sufficient protection? Genetic technologies are becoming increasingly available and profound questions are arising in relation to life and health insurance and employability as genetic screening becomes cheaper and widespread.
According to the Human Genetics Commission (HGC)
The advent of cheap whole-genome sequencing, and greatly reduced costs for genetic tests in general, will provide the platform for genetic testing to be used for novel and unpredicted purposes. (Report on The Concept of Genetic Discrimination, Aril 2011)
The HGC is in no doubt that genetic discrimination may be occurring already, that there is the potential for it to occur more in the future and that existing legislation will not protect against all the possible situations where discrimination on the grounds of genetic characteristics could arise. So is it necessary to bring in legislation to protect people from these scientific breakthroughs that can identify vulnerability to specific diseases? The US has partly responded to this issue in its 2008 Genetic Information Nondiscrimination Act (GINA), which explicitly makes genetic discrimination illegal and addresses discrimination in health insurance and employment practices. But GINA does not address adverse selection in life insurance, where concerns are more serious because there is no natural limit on payouts, and because the product is regarded as more discretionary than health insurance. In any event, why should insurers be prevented from calibrating their risks in this area? After all, the government currently recognises the needs of the insurance sector to increase levels of premiums and even not to offer insurance on grounds of age in certain circumstances; why not predisposition to certain disorders, if they are as predictive as age? Actuarial fairness and fairness before the law come fatally asunder at this point.
The HGC has recommended that government should consider in detail the possible need for separate legislation to prevent genetic discrimination, although opinion is divided on the question whether existing statutory protections against unfair discrimination adequately address concerns about possible discriminatory treatment on the grounds of genetics.
Discrimination laws – enough already?
Of course we already have laws combating discrimination on grounds of race, religion or belief, disability, age or sexual orientation in the context of employment and occupation. The Disability Discrimination Act 1995 is now absorbed into the 2010 Equality Act, which sets the anti-discrimination agenda for the foreseeable future. But will even the broadest provisions of this Act capture what may loosely be termed genetic discrimination? In 2002 the statutory body charged with monitoring the Disability Discrimination Act recommended that the Act should be extended to people who have a genetic predisposition to an impairment with regard to insurance, making it be unlawful to require an individual to undergo a genetic test or to disclose the results of a genetic test unless the scientific validity of the test had been established by an impartial body, and employees should not be obliged to take genetic tests for employment purposes. No such extension has been adopted.
But what if an employer were to treat someone less favourably because of a genetic predisposition, revealed in a reliable test? They would presumably be doing so because of a fear that the individual would develop a disability and it is therefore arguable that they are treating that person less favourably on grounds of disability. The employer, when faced with a claim under the Equality Act, is likely to contend that it is not because of an erroneous belief that an individual is disabled that they are treating an individual less favourably, but because of the risk of their developing a disability. Would this be covered by the prohibition on “direct discrimination”, or would the employer be justified under the Act? There are no cases even under the US GINA legislation to guide the UK courts in such a situation – plenty of discrimination claims have been made under GINA and related state laws but they have settled out of court.
The other basis for arguing that there should be pre-emptive legislation on this front is the argument that the mere fear of genetic discrimination may be cause people to be reluctant to take advantage of the growing array of genetic tests. The HGC in its Report claims to have anecdotal evidence that people have been discouraged from taking medical tests or participating in potentially beneficial research for fear that the results of these genetic tests may be used to their disadvantage. But is fear a sound reason for legislation? Probably not, although it may add some weight to the proposal that special protection on grounds of genetic differences is required.
Problems of definition
It is all too easy to object to the concept of “genetic discrimination” and leave it at that. But if a specific law were to be framed prohibiting such discrimination, it would have to be carefully defined and separated from a whole range of conceptually similar data, such as family history or lifestyle. A phrase such as “genetic discrimination” would otherwise fail for uncertainty or inadequacy. An example given in this debate is the illogicality of allowing an airline company to reject an application from a candidate pilot on the grounds of family history of increased sudden cardiac death syndrome, whilst making it illegal to do the same because a genetic test had revealed a genotype which equated to the same level of risk. As one commentator pointed out as long ago as 1994, in a paper on the use of genetic information on private insurers:
It has been common practice for insurers to engage in risk classification, looking at characteristics such as age, individual and family health history, health status, occupation, serum cholesterol, and alcohol and tobacco use. Insurers view genetic information as simply “one additional factor” to be evaluated in the underwriting process
The other point is the obvious one that discrimination isn’t always bad: separating people on the grounds of genetic information for different medical treatment has a sound scientific basis, whereas in other contexts this differentiation is objectionable. The problem is how to distinguish discrimination which is not justified from the justified and appropriate discrimination of genetically different types.
The difficulties of implementing such legislation will be legion. For one thing, to allow insurers and potential employers access to family history but not to genetic test information would be nonsensical. Secondly, it will be rare that a genetic biomarker alone will be a sufficiently clear predictor of future health risks; as this science progresses, the genetic data will form only a small component of a complex bundle of information including environmental factors – which bits should employers and insurers not rely on in making their assessments? As one paper in Nature asked:
If we wish to eliminate genetic discrimination in employment, without endorsing questionable distinctions, and without risking a system in which protections against discrimination are vitiated by ease of access to information and the difficulties involved in policing its use, we need to prohibit employers from obtaining all non-job-related medical information. (Mark A Rothstein and Mary R Anderlik, 2001)
Related to the problem of enforcement of such legislation is the question of redress. If the use of genetic data were to be considered unfair and therefore illegal discrimination, how is this unfair treatment to be remedied? Current anti discrimination legislation in the fields of race or religion requires equality of treatment to achieve parity of outcome. Disability discrimination is different in that it requires unequal treatment or reasonable adjustments to be made on behalf of the disabled person, to achieve parity of outcome. How would this work out in the case of genetic discrimination based a disposition for something that is going to happen in the future, such as diabetes or osteoperosis? Neither parity nor non-parity of outcome quite makes sense here. The appropriateness of a remedy depends on the moral basis for objecting to such discrimination. Some people find it objectionable that discrimination should be based on inherited and immutable characteristics. Others take a more pragmatic view, that people should not be treated now on the basis of a possible future which may or may not materialise.
A related objection to treating discrimination based on genetic information separately is that increases the stigma attached to genetic conditions and lends legitimacy to genetic reductionism and determinism. People tend to believe, rightly or wrongly, that because genetic conditions are singled out for protection, they must be particularly shameful.
A separate prohibition on genetic discrimination
… is probably never going to be viable. The potential for genetic discrimination is impossibly wide. It is relevant to every commercial transaction where one party has an economic interest in the future health of the other party, such as the granting of mortgages or commercial loans. But it also extends to non-economic relationships wherever there is an interest in explaining or predicting an individual’s current or future health, such as adoption, child custody, personal injury law, or where future behaviour is important, such as in the fields of education or criminal law.
Of course it involves issues of autonomy and privacy, under Article 8 of the European Convention and a range of important international rights instruments, including, specifically, the Council of Europe Convention on Human Rights and Biomedicine Arts 1 and 11. But insurers have to be allowed to base their decisions on rational risk assessments, and every time you are required to take a cholesterol test for life insurance cover your autonomy and privacy are unquestionably infringed in the sense that control over your own body has been eroded. Nobody in their right minds would contemplate objecting to such a demand. But maybe the acceptability of these practices will come under fresh scrutiny once they open the way to screening that reveals to the unwilling individual a future crippled by degenerative disease or the probability of passing on some fatal disorder to their children.
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“why should insurers be prevented from calibrating their risks in this area? After all, the government currently recognises the needs of the insurance sector to increase levels of premiums and even not to offer insurance on grounds of age in certain circumstances; why not predisposition to certain disorders, if they are as predictive as age? Actuarial fairness and fairness before the law come fatally asunder at this point.”
Do they really? Hopefully the audience recognises the difference between fact and opinion.
Thanks for such an interesting and measured piece. I did my degree dissertation on the regulation genetic testing in 2008 and it seems that many of the issues remain the same. It really is an issue with strong arguments for and against increased regulation.
To me, these problems can seem intractable. Though I was struck by the Nuffield Council on Bioethics “intervention ladder” in relation to public health (http://www.nuffieldbioethics.org/public-health/public-health-policy-process-and-practice, fully explained here http://www.nuffieldbioethics.org/sites/default/files/files/Public%20health%20Chapter%203%20-%20Policy%20process%20and%20practice.pdf).
I think that there’s much to learn from the ladder when looking at multi-disciplinary, population-wide regulatory problems such as the one you’ve highlighted.
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