Challenging Medical-Legal Norms: The Role of Autonomy, Confidentiality and Privacy in Protecting Individual and Familial Group Rights in Genetic Information

Abstract

In this article, Laurie discusses the impact of generating genetic information, and what the consequences are of this for individuals, and family members, whose familial genetic information is shared. The authors considers who controls access to such information, the rights and interests that arise from a group claim to familial data. The competing "right to know" versus "the right not to know" are examined in relation to genetic data, along with the role of confidentiality and autonomy. Finally, the article ends with a note on privacy and legislative considerations this may pose.