The State of Genomic Care
Here, happening and high impact
March 19, 2025
ACMI
Consumer views: What good genomic care looks like
What really matters to consumers? It’s how they’re included in their own genomic care.
Why should consumers be involved in developing genomic care services? Because they can highlight important aspects of care that might otherwise be overlooked.
At The State of Genomic Care summit, Prof Sarath Ranganathan led a panel discussion on consumer perspectives. While previous sessions dealt with the clinical and economic benefits of genomics, this session focussed on what really mattered to patients and their families.
Four aspects of good genomic care
Lucia Wang went on a long diagnostic odyssey to find the cause of her son Maxi’s condition. She talked about the power dynamics of dealing with doctors as a parent. “My biggest worry was that I was going to get shut down …by those that hold the knowledge or the power. And that's the biggest concern as a parent, that you just won't have enough expertise or voice or education enough to be able to engage in a collaborative type of conversation.”
Lucia said that she was lucky enough to have found doctors at The Royal Children's Hospital who treated her as a partner in the diagnostic journey – and that alone prompted her family to move to Melbourne. “My experience was very particular, but that's why I want to talk about it, because that's what it should be.”
Lucia felt that good genomic care should be:
- patient-centred, a collaboration between patients, families and healthcare providers
- multidisciplinary, with genomics considered in other relevant aspects of healthcare
- mainstream, available to all families who need it
- equitable, with language and socioeconomic barriers removed
Where genomic care can improve
Bonney Corbin’s family has a BRCA1 gene change that is linked to breast cancer. “I am 42 this year … and I am the oldest living person in my bloodline with these variants,” she said.
For her, the most important message was that genomic care is essential healthcare. “To me, genomic care is preventative and it’s healing.”
Bonney also cited several areas where genomic care needed to improve: from strengthening the ownership and protection of genomic data, to removing genetic discrimination and the stigma around rare disease, to developing robust genomic health policies at all levels.
Having informed conversations
As genomics becomes mainstream, more doctors will need to discuss it with their patients. Genetic counsellor Elly Lynch offered some important things for doctors to keep in mind.
“It's just thinking a little bit more about a consent conversation with the person or the family. So having a discussion on what's motivating this person to have testing or why you as a health professional are recommending this test … Having a conversation with the family about what this test might help with and what it may not be able to help with right now. And I guess talking a little bit about the impact on the wider family as well.”
Prof Ranganathan opens the panel. 
Bonney Corbin discusses her family's experience. 
Elly Lynch talks about the role of genetic counsellors.
One message was clear throughout: genomic care is here to stay, and consumers and their families need safe, holistic and inclusive access to it.
As Lucia said: “My biggest hope is that in 10 years or 18 years, this is so mainstream that nobody has to go through the journey that, at the beginning, we had to go through to get answers.”
Make genomic care consumer-friendly.
This handy guide shows how consumers can add value to genomic care services, and how to improve their experience at every step.