It was as a result of such public unease, and because of an initially over-zealous attitude on the part of insurers towards the possible utility of genetic data, that the current moratorium on using genetic test results was put in place (October 2001 - November 2006). No test results can be used in respect of life cover under £500,000; in all other types of insurance the limit is £300,000. Above these financial ceilings, test results can only be used with prior approval of the Genetics and Insurance Committee (GAIC). GAIC has so far only approved the use of test results for Huntington's Disease for life insurance. Seventeen other applications are pending in respect of five different genes: BRCA1 and BRCA2 for ovarian and breast cancer, two genes linked to a rare form of Alzheimer's disease, and Huntington's disease. The applications cover life insurance, critical illness, income protection and long-term care (although not for breast and ovarian cancer). It is the role of GAIC to assess evidence submitted by applicants on the (i) clinical, (ii) technical and (iii) actuarial relevance of the tests. Only if it is satisfied on all three counts will GAIC approve a test.
The purpose of the moratorium is to give the UK Government time for reflection. But where do we go from here? There have been calls to give the moratorium the force of law. But is this in the interests of all concerned?
There are fears on both sides about the role of genetics in insurance. The prospective insured have concerns about discrimination - by which is usually meant higher premiums or exclusion from insurance altogether. There are also privacy concerns: who will have access to my data? The insurance industry is afraid of spiralling costs and of the prospect of adverse selection, that is, the fear that if high-risk individuals are not required to disclose medical details they will over-insure; payouts will then have a disproportion negative effect on the insurance market, meaning higher premiums for everyone.
A dilemma arises from the polarised nature of the debate: in order to protect individuals' interests there should be no access to their information; yet, access to information is precisely what is required to further insurers' interests.
The reality is that there is precious little evidence of discrimination or adverse selection on either side. Much, then, is about perception and mistrust. This is fuelled, in turn, by inequalities of access to information. While the insurance industry claims to require access to actuarially significant data, it has been signally unforthcoming in providing information itself about its insurance decisions.
The current moratorium is a temporary measure that cannot last for a number of reasons. First, it would make a special case of genetic data, when the scientific and moral case is simply not there. The exceptionalist argument presupposes that 'genetic data' is a homogenous and definable term, and this is open to serious question. Is family history not a form of genetic data? Is it proposed that family history should also be excluded from consideration? If so, this will doubtless lead to higher premiums across the board. Such a ban is, of course, an option - we can choose to spread the burden of the cost of (genetic) disease throughout society - but if this is what we desire it can be better achieved through higher taxes than insurance.
A further problem is that a moratorium is a hindrance to further actuarial research. The GAIC model demonstrates an important shift in attitude - it is for insurers to prove the actuarial significance of their requests. But much more work is required on such matters, and this cannot be achieved in our current embargoed state. In the absence of accurate figures, then, insurers will simply guess about the possible significance of a particular condition and raise premiums accordingly.
Mistrust and negative perceptions abound in this area. But law should not be our first port of call; it is at best a crude tool to enforce rules; it can do even less to change attitudes. More transparency and openness on both sides is required. This means accurate evidence from insurers about the true significance, or otherwise, of (genetic) test results and more information about the basis of their decisions. Prospective insured equally should be willing to share materially relevant health data. But let us not make a special case of genetics.
Dr Graeme Laurie is Senior Lecturer in Law and Co-Director of the Arts and Humanities Research Board (AHRB) Research Centre for Studies in Intellectual Property and Technology Law at the University of Edinburgh.