Medical science needs to find its Voice

I was a bit overwhelmed to be appointed to the CSIRO Board. To be recognised as an Indigenous scientist was a lovely thing, particularly if we look back to my father’s generation and their struggle just to be recognised as citizens of this country. Hopefully I can do a good job, and in some way be a part of telling the story of Indigenous knowledge in science and what that means for health and wellbeing. Time will tell.

I studied medicine at Newcastle University, then worked for a few years in the public hospital system on the Central Coast of NSW. My training was heading towards intensive care medicine and anaesthetics, which I really loved. But in 1997 I was approached to apply for a scholarship established by the Victorian Friends of Hebrew University to undertake a Masters of Public Health in Israel. My year in Israel was one of the most important moments in my career. Once completed, I then had to face the difficult question of returning to my clinical career or heading off into public health.

I had to face the difficult question of returning to my clinical career or heading off into public health.

That was a fairly tortured few years, deciding which path to pursue, but I chose the public health arena. In the last 20 years I’ve been involved in medical research trying to understand and overcome health inequalities as experienced by Aboriginal and Torres Strait Islander people and communities.

Harnessing the science of genomics, what is housed in our DNA, has been the most recent area of research for me, and it’s certainly an essential part of biomedical sciences for the foreseeable future. But it’s not the be-all and end-all when it comes to overcoming the drivers of health inequalities experienced by Indigenous people.

The mapping of the human genome, and the increased access and capability of the more advanced technologies in genomic sciences, can be a step change in healthcare delivery. But as it currently stands, Indigenous people – certainly in Australia – have been marginalised from that conversation. As a consequence, they’re being impeded from receiving the potential benefits of all that medical science has to offer.

As it currently stands, Indigenous people – certainly in Australia – have been marginalised from that conversation.

It’s coming down the tracks at us whether we like it or not. The question is: how do we ensure two fundamental things. One: how a community is engaged and empowered in the genomic space, both from a healthcare perspective and also from a science perspective? Second: how do we ensure that all that genomics has to offer actually delivers meaningful benefit to Aboriginal people and communities? Without particular efforts and appropriate investment in people, capacity, capability development and community guidance over that process, we’re never going to see the benefits received equitably across communities. There is an enormous job to be done.

As it currently stands, most of the conversations within genomics here in Australia and internationally about equity is to make sure that there’s a few diverse peoples included in existing datasets and processes. But that inclusion alone is not going to be enough to deliver equity. My very strong view is that if we want to deliver equity in genomics for all peoples, we must ensure that diverse communities have a say in what gets done, and how, and for what purpose. They have a role in defining what the benefits should be, and could be, from their perspective, not simply from scientists saying, “Well, we have all the answers to how we’re going to make your lives better.”

If we want to deliver equity in genomics for all peoples, we must ensure that diverse communities have a say in what gets done, and how, and for what purpose.

People need to have agency in decisions about the use of genomics. We need to make sure that we understand that previously marginalised and disadvantaged communities should be able to engage on their terms in what science has to offer, and we are obliged to train the next generation in understanding how to harness the benefits that could come from the application of this technology. That way, we make sure that it isn’t just available to the chosen few to drive the inequality further, and that we actually bend the will of genomic technologies to overcome conditions or issues that drive inequality in the first place.

You can’t use genomics to solve poverty, and disadvantage still looms large as one of the key drivers of inequalities for Aboriginal and Torres Strait Islander people. But we can try to harness the power of genomics to identify solutions for conditions which inequitably drive poor outcomes for our communities such as cancer, heart disease and diabetes. That’s very strongly our focus.

You can’t use genomics to solve poverty, and disadvantage still looms large as one of the key drivers of inequalities for Aboriginal and Torres Strait Islander people.

If there’s one thing we’ve learned over the last 20 years, it’s that the best solutions are driven by, informed by, guided by, and controlled by Indigenous people from their own perspective. That’s where we’ve seen the most benefit from a hard scientific perspective, particularly in health outcomes.

We know that science is critical, and we know that modern medicine has a lot to offer all people. But how do you deliver that? How do you frame it? How do you apply it? How do you fund it? How do you evaluate its impact? How do you change direction when you need to? And how do you make sure it delivers the impact and benefit that communities define?

That demands that Aboriginal and Torres Strait Islander people have a say in what that looks like and how it gets done. It’s not an unreasonable expectation.

There’s no way forward unless Indigenous Australians are heard and have agency in the things that matter to them and will impact on their lives, their families’ lives and their communities’ lives, now and into the future.

As told to Graem Sims for Cosmos Weekly.