Protecting genetic privacy in the research context : where to from here?

The aim of this paper is to explore some of the key privacy issues that arise in relation to human genetic research in Australia. The opening part of the paper explores the concept of ‘privacy’ and the meaning of the term ‘human genetic information’ and examines the forms and circumstances in which human genetic information is typically accessible in the research context. It then proceeds to catalogue some of the characteristics of genetic information, with a view to evaluating whether genetic information is in some way unique and therefore warranting special protection. The second part of the paper seeks to outline the existing regulation of privacy in the research context and its implications for protecting the privacy of human genetic information. Finally, the paper seeks to assess the adequacy of current privacy protection of human genetic information in the research context and determine whether this is an area where increased regulation is required.32 page(s