As our technologies have advanced, so has our understanding of—and ability to manipulate—the genes of living things. With our increasing globalisation, researchers can share information or biological material with colleagues on the other side of the world.
These collaborations can be enormously beneficial but also raise tricky legal and ethical questions, which is why the Centre's researchers have provided expert advice at national and international levels on a range of topics.
Developments in genomics have already helped people with heart disease, asthma, diabetes, and cancer, and scientists are continually looking further ahead: from identifying genes that cause disease to tailoring drug treatments to individuals, or the development of predictive testing for diseases.
But the advances have gone hand-in-hand with a fear that the science could be put to ill-use, ultimately leading us into a Gattaca-esque universe. The Centre brings together experts with law, biomedicine, genetics, and broader health expertise, to address the intersection between what may be possible with science and what should be possible.
Its researchers are playing a leading role in ensuring that scientists who work in genomics are doing so ethically and legally, but in a way that facilitates collaborative research and results.
The transfer of 'genetic material' might include cell lines or even software for use in healthcare, agriculture, or environmental work—so ensuring genetic material is treated ethically is of critical importance.
Material Transfer Agreements, which allow for the sharing of biological material with multiple labs and researchers, are playing an increasingly important role in genomics research. They outline the conditions of the agreement, such as the rights of each party, including which party has right to any outcomes of research supported by shared genetic material.
In the past, the sharing of genetic material has often been under an informal agreement, which raises issues as the nature of genomics is becoming increasingly commercial.
In 2014, legal experts from the Centre began interviewing scientists who use these agreements, to discover how they work in practice and how they can benefit researchers and prospective patients.
The project, which also examines the history and development of these agreements, is coming to a close and will lead to recommendations to ensure they're legally and ethically sound, while supporting scientific advances.
The Centre's experts have served on national and international advisory boards, including: making submissions to the World Medical Association consultation for a Declaration on Ethical Considerations Regarding Health Databases and Biobanks in 2015; submissions to the review of the Gene Technology Regulations in 2016; and serving on the Safe Harbor Task Team of the Global Alliance for Genomics and Health.
- Bullying law reform: Bullying was included as an example of 'unacceptable behaviour' in the 2016 Tasmanian Education Act 2016 (used to regulate the conduct of students and others at state schools) following a report by the Tasmanian Law Reform Institute. The Tasmanian Attorney-General asked the Institute to examine the law on bullying and cyber bullying in 2014, following a public anti-bullying campaign in the wake of the suicide of an alleged victim of bullying. The Institute released an issues paper on the topic at a public information session in 2015 and used the extensive feedback they received for their final report.
- Law and the environment: Environmental law researchers made submissions to three Federal Senate Inquiries relating to biodiversity offsets, bilateral agreements, and standing laws under the Environment Protection and Biodiversity Conservation Act 1999.
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About Professor Dianne Nicol
Professor Nicol's unique contribution in her field is her capacity to marry empirical research with law and policy reform in areas of new and emergent technology. Policy makers are increasingly looking for sound and objective evidence bases to guide law and policy reform, rather than being exposed to anecdotes and lobbying by groups with vested interests. Her empirical research on the Australian medical biotechnology industry remains one of the few sources of evidence to assist policy makers in that area. Similarly, her research on public attitudes towards, and public trust in genomics and personalised medicine provides a vital contribution to the evidence base for reform of the framework for regulating this new and rapidly developing area of medical technology. Professor Nicol's research is cross disciplinary, in that it crosses the boundaries of law, biomedicine, economics, innovation studies, social science and technology.View Professor Dianne Nicol's full researcher profile