Tucked away in the discrimination law review public consultation is a significant outline of current government policy regarding genetic discrimination, and the government’s conviction that there is no current justification for legislating to prohibit genetic predisposition discrimination.
Current situation
There is currently no protection against discrimination on grounds of genetic predisposition in British law. Government policy is, so far as possible, to rely on non-legislative measures to deal with the threat of genetic discrimination. For example, in 2005 the Government and the insurance industry published a Concordat which included an extended voluntary moratorium on insurers’ use of predictive genetic test results until 2011 [1]. The Information Commissioner’s Office also provides specific advice to employers on the use of information from genetic tests.
Although research by the Human Genetics Commission, the independent body that advises the Government on genetics issues, has established that employer-driven genetic testing is not presently occurring in the UK, experts foresee that genetic testing may become an aspect of pre-employment health checks in the future. This could deny employment opportunities to individuals with pre-symptomatic genetic conditions. Moreover, concern has also been expressed that genetic predispositions could be used to deny health insurance to those with genetic predispositions, or to make it prohibitively expensive.
Conceptual instability
Thus far the government’s pragmatic approach has sufficed. However, its analysis of the relationship between health and disability, between genotype and phenotype, and of ensuing rights and identities is unlikely to stand the test of time. The government argues that, since pre-symptomatic individuals have no impairments they are not disabled; and it claims that extending disability discrimination to protect such people would risk diluting the rights of the disabled. Identity and rights, it seems, are established at the point of the onset of disease, and not by genotype. Although this may be welcomed by critics of genetic essentialism, a crude reduction of disabled identity legal rights to those with symptomatic disease creates problems.
Firstly disease based identity and claims for associated rights may occur during the pre-symptomatic phases of a genetic illness. For example the Huntington’s disease community consists not only of sufferers, but also of known future sufferers and possible future sufferers. Lifestyle and behaviour is influenced long before the onset of disease, simply by the prospect of disease. Despite the very real differences between the pre-symptomatic and symptomatic phases of genetic disease, the pre-symptomatic phase is nonetheless part of the experience of living with Huntington’s disease; a genetic strand binds all phases into an identifiable network of identities and ways of life. A dichotomous paradigm of ‘health’ followed by ‘disease’ – and the onset of a resulting impact on daily activities – does not provide an adequate account of this situation.
A second problem with the dichotomous ‘healthy’ vs ‘disabled’ model is that it does not resonate with the rights and responsibilities that the contemporary biological citizen claims and exercises in the community and as an individual. Rights and appropriate treatment in connection with genetic conditions may begin before the onset of disease. The test for phenylketonuria, for example, is offered by the NHS shortly after birth, and then becomes the responsibility of the individual to manage (in association with proper food labelling by industry). Hopefully then, the genetic condition will never become manifest in the form of a ‘disability’; nonetheless it is only by collaboration between state and individual at the pre-symptomatic stage that additional disadvantage is avoided. This is perhaps, an exceptional example, but as genetic diagnosis and preventative treatments develop so to will demands by individuals from the state for pre-emptive genetic testing. It is not far-fetched for example, to imagine citizens demanding as rights genetic tests to establish what lifestyle choices they can make to protect against genetically linked disease.
Not only may the pre-symptomatic citizen claim certain rights, but they may also require certain protections against state discrimination. Genetic conditions associated with criminal behaviour, for example, may generate a field for preventative intervention, but will also demand robust protection for individuals against coercive intervention by the state. Such individuals would benefit from a non-symptomatic genetic identity to collaborate and campaign under.
Conclusion
The scenarios discussed suggest that a crude disabled vs normal paradigm cannot adequately engage with the challenges that increased genetic diagnostic and treatment abilities will raise. Dichotomous notions of ‘health’ and ‘disability’ are unlikely to be sustainable in an era of predictive genetic diagnosis and associated preventive treatment. An increasing disintegration of these opposites into poles on a graded spectrum is likely to occur at popular and medical levels, but, given preferences for clear definitions in law, a third identity – relating to pre-symptomatic genetic disease – may have to be forged for the purposes of government. In the name of human rights and human dignity this category of people will demand diagnostic testing, and also protection against social discrimination that could make a disability of their condition even before the onset of disease.
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[1] This requires that customers will not be required to disclose the results of any predictive genetic test if their policy falls below specific financial limits (£500,000 for life insurance, £300,000 for critical illness insurance or £30,000 per annum for income protection insurance). Even if these limits are exceeded, insurers may only require customers to disclose the results of any predictive genetic tests where that test has been approved by the Government’s Genetics and Insurance Committee.
