Families have black sheep, missing sheep and dead sheep.[1]

22.1 This chapter deals with the operation of genetic registers and asks whether the existing regulatory framework to protect the privacy of genetic information collected and held on genetic registers is adequate. The collection and disclosure of family genetic information is central to the operation of genetic registers and the conduct of genetic counselling. The familial or collective nature of genetic information raises special issues in this context, which are discussed below.

[1] L Skene, ‘The Genetics Debate: Why Doctors Must be Heard’ (Paper presented at 2001 UMMS Lecture, 15 November 2001), quoting Professor Graham Giles, Director of the Cancer Epidemiology Centre, Anti-Cancer Council of Victoria, explaining the need for genetic registers: Lecture to Graduate Students in Law and Human Genetics, University of Melbourne, October 2001.