The Rogue Senator and the Protection of Genetic Information

The editors of Nature have today called for the US Senate to bypass Senator Tom Coburn’s (Republican, Oklahoma ) ‘hold’ the Genetic Information Non-discrimination Bill. The Bill, if enacted “would protect people from being discriminated against by health insurers or employers on the basis of their genetic information” but Senator Coburn has used a procedural manoeuvre called a “hold” to prevent it from coming to a vote in the Senate. In their editorial the editors suggest that by putting a hold on this Bill, the senator from Oklahoma is preventing the enormous research and clinical progress from continuing and further developing the era of personalised medicine.

        Whilst this is undoubtedly true, the problem with the senator’s behaviour rests on a perhaps more fundamental ethical concern than the denial of benefits. The primary motivation for the Bill is the protection of an individual’s genetic information so that employers and health insurance companies cannot deny employment or health coverage to individuals (for example) on the basis of their genetic predispositions. There are a number of ways of grounding the individual’s claim to this protection but perhaps most obvious is via a right to privacy or a right to confidentiality. This Bill can do a good deal to reassure patients in the US that their private information, ‘given’ for research or clinical purposes cannot be used against them in these ways. If, as the editors suggest, this information is becoming available anyway then it is urgent that the relevant protections be in place.

        There is an interesting debate to be had about the level of protection that is required for this kind of information. On one side of the debate are those who think that the clinical and research benefits should trump the right to confidentiality – putting too many restrictions in place will, in all likelihood, prevent the realisation of some benefits. George Church, mentioned in the editorial, is clearly on this side when he claims that genetic information should be freely available. On the other side are those who think the protections should be stringent – that the wrongs associated with breaches of confidentiality and violations of privacy outweigh the potential benefits.

        The point that the editors fail to make is that it is only those at the extremes of this debate who should have any objections to the Genetic Information Non-discrimination Bill. If one believed that there should be no restriction, then perhaps any restrictions would be too many. Alternatively, one might think that this Bill is not restrictive enough and want a tougher piece of legislation. But given that Senator Coburn has ‘holds’ on 86 other pieces of legislation and his suggested amendment to this Bill is designed to avoid companies being sued for discrimination, it is very unlikely that he would adopt one either of these positions.

        Those who are somewhere in the middle, who believe that privacy and benefit should be balanced, should, with the editors of Nature, support these steps.