Genetic Databases: One for All and All for One?

Abstract

Currently, consent is not required for the taking of DNA samples for the National DNA Database®, which is used for forensic purposes, whereas it is for public health genetic databases, such as UK Biobank. The key question that this paper addresses is whether the whole population should be compelled to participate in one genetic database used for a number of different public purposes—especially criminal investigation and medical research—on the basis of the public interest. This question is analysed through the lens of a “community of rights”, rather than through a utilitarian or duty-led perspective. In seeking an answer, the paper compares the two kinds of genetic databases and current requirements for inclusion in them. It then assesses whether citizens should be compelled to contribute to public health genetic databases, either on the basis that this would prevent harm to others or on the basis of positive responsibilities to assist; and finally, whether this can be justified on the basis of the need for collective action. The conclusion reached is that, even if each step towards required participation in a population-wide multi-purpose national genetic database seems sound, we need to question whether such a policy would be contrary to the sustainability of a community of rights. In particular, we need to question whether such a development might corrode the basis of moral community and the dignity of moral choice, thereby presenting a threat to the very conditions that make such choices meaningful.