Donor Perspectives on issues associated with donation of genetic samples and information: an Australian viewpoint

This paper provides a legal overview of key issues associated with donation of genetic samples and information from a donor perspective. In particular, it addresses the property status of samples as well as issues in respect of consent, privacy, commercialisation and benefit sharing. The paper highlights the need for appropriate protection and safeguards for individuals, but also, importantly, for understanding what donors actually think and want in terms of genetic research and the use of their samples and information. The paper seeks to emphasise the importance of transparency and accountability in the conduct of research in order to maximise donor participation and confidence and public trust in general

Disclosure of genetic information to at-risk relatives: recent amendments to the Privacy Act 1988 (Cwlth)

The federal Privacy Act 1988 (Cwlth) has recently been amended to permit the disclosure of genetic information to an at-risk relative when there is a serious (although not necessarily imminent) threat to that person’s life, health, or safety. This represents a significant exception to the statutory obligations to maintain the privacy of a patient’s health information. However, its scope of operation is limited in that it applies only to doctors and other health professionals working in the private sector, and does not cover those working in State public hospitals or for Commonwealth Government agencies

Genetic privacy

As a result of developments over the past half century in the mapping and sequencing of the human genome there is now increasing capacity to test for genetic mutations linked with specific diseases. There are different forms of genetic testing (eg, diagnostic and carrier testing). Perhaps most relevant for this chapter is predictive genetic testing of individuals whose families are affected bu a genetic disorder, to ascertain whether they have inherited the gene mutation and are therefore at risk. Whiles knowledge of predisposition to genetic risk can be psychologically burdensome, identification of a gene mutation through predictive genetic testing can facilitate surveillance, with the likelihood of detecting the onset of disease earlier, at a time when treatment is more likely to be effective