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The UK’s Human Genetics Commission, which advises the Government on scientific advances in genetics, and in particular on their ethical, legal and social implications, has published its response to the Discrimination Law Review’s consultation on proposals for a Single Equality Bill for Great Britain (see previous news article). In its response the HGC calls for comprehensive legal protection against ‘discrimination on any genetic grounds’ – a recommendation that goes far beyond the question asked in the consultation document, which refers only to the “discrimination on the grounds of genetic predisposition to disease”.

The HGC rejects the Discrimination Law Review’s suggestion that there is little evidence of a current problem, presenting an Appendix listing anecdotal reports of alleged ‘genetic discrimination’ in the UK and elsewhere. The examples presented cover a broad range of situations including prejudice against people with diagnosed genetic conditions, inappropriate applications of DNA tests, unjustified use of family history information, and social stigmatisation of families affected by highly penetrant genetic disease. The HGC notes that clinicians report that people are reluctant to take DNA tests that may be important for their health, because of fears that test results may be used to their disadvantage by third parties such as employers or insurance companies. Genetics researchers also encounter the twin difficulties of extremely burdensome regulation to protect research participants’ privacy and autonomy, while at the same time being unable to foresee all possible future uses of DNA sequence data or to guarantee its complete security; the suggestion is that legislation to outlaw genetic discrimination would remove both of these problems. The HGC believes that “opportunities for genetic discrimination will increase” as knowledge and technology advance, justifying pre-emptive legislation.

Any legislation outlawing ‘genetic discrimination’ or ‘discrimination on any genetic grounds’ would have to define the term ‘genetic’. Unfortunately, the HGC’s response is completely silent on this key question. Its discussion covers far more than just DNA-based information, ranging through family history (which integrates both genetic and shared environmental effects), highly penetrant diseases that are predominantly diagnosed by phenotypic features, and weakly penetrant DNA polymorphisms that interact with environmental factors to affect susceptibility to common disease. The only logical conclusion from the HGC’s suggestions is that the proposed legislation should apply to any human trait with a genetic component – in other words to all human characteristics and all ways of measuring or detecting them. It is difficult to see how such a law could be drafted or could operate. Rather than calling for legislation, a more effective approach would be to lobby for resources for the thorough evaluation and appropriate use of all biomedical tests (DNA-based or otherwise), and to champion a more rational and modern understanding of genetics. These arguments are developed more fully in the PHG Foundation’s response to the Discrimination Law Review’s consultation.