What’s Wrong with the Right to Genetic Privacy: Beyond Exceptionalism, Parochialism and Adventitious Ethics

Abstract

Advances in full genome sequencing have led to a practical and ethical conflict between protecting genetic privacy and large-scale genomic research. This chapter concerns the value of genetic privacy, and consists of both a negative and positive claim. The negative claim is that genetic privacy is not intrinsically valuable, and that the barriers to genomic research posed by an unqualified right to genetic privacy are not justified. The positive claim is that genetic research is supported by the principle of respect for autonomy.