'Disclosure ‘downunder’: misadventures in Australian genetic privacy law' by Wendy Bonython and myself in
Journal of Medical Ethics comments that
Along with many jurisdictions, Australia is struggling with the unique issues raised by genetic information in the context of privacy laws and medical ethics. Although the consequences of disclosure of most private information are generally confined to individuals, disclosure of genetic information has far-reaching consequences, with a credible argument that genetic relatives have a right to know about potential medical conditions. In 2006, the Privacy Act was amended to permit disclosure of an individual's genetic information, without their consent, to genetic relatives, if it was to avoid or mitigate serious illness. Unfortunately, additional amendments required for operation of the disclosure amendment were overlooked. Public Interest Determinations (PIDs)—delegated legislation issued by the privacy commissioner—have, instead, been used to exempt healthcare providers from provisions which would otherwise make disclosure unlawful. This paper critiques the PIDs using documents obtained under the Freedom of Information Act—specifically the impact of both the PIDs and the disclosure amendment on patients and relatives—and confidentiality and the procedural validity of subordinate laws regulating medical privacy.
The thirty page 'The Return of Results in Genetic Testing: Who Owes What to Whom, When, and Why?' [
PDF] by Stephanie Alessi comments
With the advent of large-scale genetic research, discoveries about the human race that never before seemed possible are becoming a reality. To support these scientific discoveries, biobanks catalog library-sized collections of DNA samples and offer researchers access to an increasingly diverse supply of genetic material on which to do research. These stored samples provide the means for studies that, over time, will uncover benefits about which we can now only speculate.
Despite the enormous potential that the future of genetic research holds, the research process has potentially troublesome implications for the human subjects who contribute their genetic materials. Chief among these concerns is the question of what to do with the individual data that arise as a result of genetic research. Genetic material may reveal features of a person that she was not even aware existed, providing potentially useful insight into one’s health status that, if available, many individuals would want to know. On the other hand, some people, for moral reasons or otherwise, may prefer not to learn about their genetic predispositions due to the inherent uncertainty of such information. Thus, research design and governance must allow individuals to make their own decisions.
Furthermore, placing a responsibility on researchers to provide their subjects with all theoretically interesting or useful information can detract time and resources from a study’s primary purpose. As such, researchers frequently find themselves forced to balance the subjects’ personal interests against their research goals. Yet there exist no uniform standards on which either researchers or subjects may rely as they perform this balancing act; there is little guidance for either party as to what information should be communicated. They are thus left with the unanswered question: To what extent is there an ethical obligation, and to what extent should there be a legal duty to return genetic results to a research subject?
This paper balances three competing goals — promoting socially beneficial genetic research, protecting individual health and access to personal information, and protecting individual autonomy and privacy — and proposes the adoption of specific, limited duties regarding planning for, acquiring informed consent about, and reporting genetic results.
