Introduction

21.1 Genetic information may allow inferences to be drawn about persons other than the individual to whom the information most directly relates—most importantly about genetic relatives.^[1] This leads to questions about how health professionals^[2] should collect and deal with genetic information about genetic relatives, where that information is derived in the course of diagnosis, treatment or counselling.

21.2 This chapter examines issues related to the collection and disclosure of genetic information by health professionals, and individuals’ rights of access to genetic information about themselves, or their genetic relatives, held by health professionals. The chapter concludes that the Privacy Act 1988 (Cth) (Privacy Act) should be amended to broaden the circumstances in which health professionals may use or disclose genetic information to prevent threats to life, health or safety. The chapter also concludes that the Privacy Act should provide that individuals have a limited right to access genetic information about first-degree genetic relatives.

21.3 The collection and disclosure of family genetic information, and rights of access to such information, are central to the operation of genetic registers and to the conduct of genetic counselling. Issues raised by the use of genetic information in these contexts are addressed in Chapter 22.