Genetic Privacy

Abstract

Privacy is a right with many aspects. Although, a uniform approach on privacy is quite often sought, a consensus is growing that there are not only one but many privacy rights. This chapter explores whether there is in fact a right to protect our genetic privacy, since this is a right quite unique in its characteristics and is certainly not identified with our general presumptions about privacy. Its uniqueness lies in the fact, that apart form the dominant definition of privacy as a right to be let alone, as an individualistic right, genetic privacy protects not only the individual but also the members of his/her family. The present paper is examining the ‘hereditary’ and ‘shared’ character of our genetic information in an attempt to shape a right to genetic privacy that is based on the equilibrium of individual autonomy, family and public interest. In order to support such an argument, the premises of our genetic self are examined in connection with autonomy and its boundaries, mainly paternalism and genetic exceptionalism. Along this line, basic notions of the liberal privacy theory are critically examined, mainly the notions of control, confidentiality and consent, so as to maintain the existence of a right to genetic privacy that can enhance the individual’s autonomy without founding it on its selfish, individual interests.