Professor Anne Kelso: health research faces big ethical and social challenges

New technology is opening up exciting opportunities in health and medical research but also delivering new challenges such as ethical issues, the head of the NHMRC says.

Delivering the Wunderly Oration at the TSANZSRS meeting, Professor Anne Kelso called on the research sector to be ‘transparent’, ‘cautious’ and ‘respectful’ in the necessary discussions.

“Some of these new technologies are presenting us with really profound ethical issues which society must consider and face if we are to find a sensible way forward. That’s a role for all of us at this incredibly important time.”

“And I think this really puts the onus in part on the research sector as well as bodies like the NHMRC to try to talk about these issues in as open and clear a way as we can so that everybody really understands what this science is, what its limitations are, and what the ethical considerations are.”

Professor Kelso, CEO of the NHMRC, used the example of three-parent IVF embryos to prevent mitochondrial disease.

“That became apparent last year when in response to advocacy from families who suffer from mitochondrial disease, there was a Senate Inquiry which then reported on the science of mitochondrial replacement. It was suggested Australia should now undergo consultation to consider changing our legislation to enable the curing of mitochondrial disease by creating embryos in which the mitochondria come from one healthy donor, the nuclear genome comes from the mother in the family of interest, and the father of course,” she said.

“The government delivered its response accepting most of those recommendations in February and part of those were that the NHMRC should work with the Department of Health to lead a consultation on the issues that are raised by these technologies and whether Australia should be changing its legislation to enable the production of these three-parent embryos.”

She said an Expert Committee held its first meeting a few days ago and public consultation will be announced this month.

“These issues are with us now. Advances in technology are really opening up new fields of research and are rapidly changing and increasing our options for the prevention and treatment of disease.”

Professor Kelso said that while discussions often focused on high-tech solutions, it was important to remember that even today, public health programs that prevent disease remained the most equitable and cost effective ways to reduce the overall burden of disease.

“So we need to keep a good balance there.”

Research wish list

She said her wish list for health and medical research included a broad range of research capability including workforce and infrastructure.

“We need to have a very solid foundation of basic research and not just in the STEM and clinical fields but also in the humanities and social sciences (HASS) because many of the issues we are facing in developing and implementing new medical technologies are in fact social. And many of the public health programs we might want to achieve depend really on behaviour in society, community attitudes and how we influence this behaviour in a positive way.”

She also highlighted the need for multidisciplinary research and end-user integration of research activities.

“We need really strong pathways for important co-design and uptake of research and research results. That means connections between researchers, government and the community. It means much better mechanisms for information sharing and it means commercial translation.”

Professor Kelso said a massive increase in direct funding for health and medical research – about $650 million in 2020-21 from the Medical Research Future Fund (MRFF) – was an ‘incredibly important experiment’.

“We need to learn as a country to set national priorities and to manage large challenge-based funding which is what the MRFF allows us to do. It’s a really big opportunity so we have to work together to make it an effective vehicle.”

Professor Kelso reminded the meeting that the causes of death and burden of disease can change dramatically over relatively short periods of time.

“We can already see that our challenges are changing now – partly the complex chronic diseases of ageing and affluence and the consequences of human activity such as antimicrobial resistance and global warming.”

“We are going to need a strong national funding system across STEM and HASS and supporting both investigator-initiated and priority-driven research.”

“All of us, whichever part we play in the research sector, have a critical place in interacting with the wider community and providing sensible, informed comment on these challenges.”

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