Just Genetics: How far does the moratorium on the use of genetic data by insurers within the UK accord with Rawls’ principles of justice?

Since the completion of the Human Genome Project in 2004, understanding of genetic information has expanded, opening much greater possibilities with regard to identifying, diagnosing and treating genetic conditions. Within the National Health Service, a report produced by the Human Genomic Strategy Group (HGSC) aims to roll out a comprehensive system of genetic testing within the NHS, and Department of Health discussions are underway to implement it.

Given this, more individuals are informed about their genetic status and what it may mean than ever before. As the UK insurance industry operates on principles of mutuality, there was (and is) substantial interest in the potential this data holds when it comes to identifying those who will suffer from future disease. However, currently, within the UK, there is very little use of such data, as the industry complies with a voluntary moratorium first announced in 2005, now extended until 2017. As of the publication of this thesis, the moratorium has been in place for seven years, and little progress has been made in establishing what should replace it.

It is here that this thesis makes a contribution. Using a Rawlsian methodology, this piece establishes first, under a system of mutuality such as that within the UK, what one should do when considering whether to use genetic information in the insurance context. This is done through examining representative conditions, and assessing whether it would be justifiable to allow insurers to access data relating to these conditions. Second, the thesis then assesses how far the current UK moratorium complies with the principles of justice, and in cases where it does not, suggests feasible changes to make it more compliant. In this way, I hope to contribute, at least in part, to answering the question of where the UK should proceed post-2017.