Democracy and genetic privacy: The value of bodily integrity

Abstract

The right to genetic privacy is presently being incorporated in legal systems all over the world. It remains largely unclear however what interests and values this right serves to protect. There are many different arguments made in the literature, yet none takes into account the problem of how particular values can be justified given the plurality of moral and religious doctrines in our societies. In this article theories of public reason are used in order to explore how genetic privacy could be justified in a way that is sensitive to the “fact of pluralism”. The idea of public reason is specified as the idea that governments should appeal only to values and beliefs that are acceptable to all reasonable citizens in the justification of rights. In examining prevalent arguments for genetic privacy – based on the value of autonomy or on the value of intimacy – it is concluded that they do not meet this requirement. In dealing with this deficiency in the literature, an argument is developed that genetic privacy is fundamental to the democratic participation of all citizens. By referring to the preconditions of democratic citizenship, genetic privacy can be justified in a way that respects the plurality of comprehensive doctrines of morality and religion in contemporary societies.