How did you become an expert in this field?
Professor Dianne Nicol began her career as a biologist. But after moving from Britain to Tasmania, Dianne decided to study law. This was ‘the best career move’ she made.
‘The combination of science and law opens so many doors,’ Dianne says. ‘In the early 1990s the human genome project was just taking off.’
During the human genome project biologists sequenced the 3 billion letters encoded in DNA that make up human genes. With this new knowledge it was possible to identify the genes of individual people. Many people worried employers and insurers could use this information, causing negative effects on their lives. Dianne explains:
‘Everybody around the world realised sequencing the human genome raised new ethical, legal and social issues about privacy, consent and discrimination. After I trained in law, some of my law professors asked me to work with them on these issues.’
Good governance is important
Dianne says it is important to understand the ethical, legal and social issues of genetics research. This allows us to translate the issues into good governance or regulation. This is a broad concept that includes:
- hard laws such as prohibiting human cloning
- research guidelines and processes such as ethics guidelines and ethics committees
- norms of behaviour such as standards of scientific practice.
What research are you doing right now?
Dianne is a researcher on 4 MRFF genetics research projects. These investigate:
- community views on human gene editing
- building trust in stem cell research
- commerce and genetics
- how to govern genomic data.
Each project is researching community concerns about genetics technologies. They are looking for the most effective ways to address community concerns through new kinds of governance and regulation.
What are the most urgent ethical, legal and social issues in genetics research and how can we address them?
1. Commerce and genetics
Dianne says the commercialisation of genetics technologies is an urgent issue. ‘The public are worried about the involvement of commercial parties in research in health care. This is because they know the profit motive is a dominant motive,’ she explains.
‘Often researchers ask the public to participate in research for altruistic purposes. If they participate, they carry risks associated with privacy and discrimination. Yet they see that other people could make profits from this. It's a deep concern to them.’
Dianne recognises this public discomfort. But she says we need to come to terms with commercialisation. It ‘allows research to be translated so that we get the healthcare benefits.’
In Dianne’s view the public can benefit from commercialisation if we ‘retain openness in research and build in benefit-sharing.’
2. Open research
Dianne says openness in research is important for many reasons. These include allowing:
- research to have as broad a dissemination as possible
- other researchers to test and validate the results
- other researchers to build on researched findings to develop them as far as possible
- the public to trust research because we know what is going on.
3. Sharing the benefits of research
Benefit sharing gives research participants and the public a share in the benefits from research. Governance and regulation can ensure this takes place.
For example, legislation could require medical researchers to register human stem cell lines at a national registry. This could improve transparency about stem cell research, as Dianne explains:
‘Registration could make stem cell lines accessible to all researchers. This would benefit the public to the greatest extent possible.’
4. National collaboration
Another urgent issue in Australia is that different laws apply in different states and territories. Dianne says the solution is for experts to collaborate. She is part of a new national network of ethical, legal and social issues researchers.
The new network includes medical researchers, healthcare providers and community participation. ‘The idea is to have a conversation where all the stakeholders are in the room,’ Dianne says.
5. The cost of biotechnology
‘Biotechnologies are expensive,’ Dianne says. ‘But I do think that each step along the path of developing a new biotechnology creates the opportunity to offer more equitable benefits to society. We can implement biotechnology in a way that can benefit the greatest number of people. That, to me, is the core of it all.’
What are your plans for the future?
Dianne has retired from her university position as Director of the Centre for Law and Genetics at the University of Tasmania. But she is showing no signs of slowing down her pace of research.
‘After so many years in this area, I just see that there is so much still to do. We're at this critical juncture where funders like the MRFF are realising that this is important work. And I think I just can't walk away at this point!’