Staying alert to ethical risks and responsibilities in brain cancer research.
As brain cancer research evolves alongside new technologies, ethical questions around consent, privacy and data are growing more complex. For Professor Wendy Lipworth, that’s why ethics must be embedded from the outset of any new project.
“The ethical challenges in medical research - specifically around genomics, tissue collection, and data sharing - aren’t new,” she says. “But technology keeps evolving, and each new wave, whether it’s big data or AI, brings old questions into sharper focus. Consent, privacy, ownership, custodianship - these issues are never static.”
Wendy is a Professor of Bioethics at Macquarie University and a long-standing member of Brain Cancer Australia’s National Consortium Steering Committee. She draws on more than two decades of experience at the intersection of medicine, research and public policy to inform the development of national infrastructure platforms that will streamline biobanking, clinical data, and patient access to trials.
“I think there’s no group better placed to tackle this disease than Brain Cancer Australia. They don’t need a bioethicist in the room to tell them to treat people with respect or communicate clearly. They already do that. There is a culture and integrity and ethics isn’t an add-on — it’s woven into how they work.”
She sees her role with Brain Cancer Australia growing as the research infrastructure platforms move from design to implementation, where staying alert to risks - especially as technology evolves faster than regulation - is essential.
Artificial intelligence is one such example. “AI enables faster and more complex analyses than ever before, but that speed comes with risk,” Wendy says. “Because these systems learn from the data we give them, there’s always the chance of flawed or biased outcomes. That’s a challenge we have to anticipate and manage.”
With the rise of technologies like organoid modelling and AI, Wendy sees an ongoing need for collaboration between scientists, clinicians, and ethicists. “Some of these areas - like the moral status of brain organoids - are still hypothetical, but they raise profound questions,” she says. “And we need the right people thinking them through early.”
She points to past scandals - like the retention of organs during autopsies without family consent - as reminders that ethical lapses are not always intentional. “Up until the 1990s, those practices weren’t considered wrong. But when social norms shifted, they caused enormous distress. We must consider whether today’s standards will hold tomorrow.”
“Ethics isn’t just about getting a tick from an ethics committee. It’s about staying alert to risks and responsibilities throughout the life of a project."
Wendy sees ethics as a process of ongoing reflection, not a fixed set of rules. Trained in a range of frameworks — from outcome-based models to those focused on power and equity — she says there’s rarely one right answer. “You have to look at issues from multiple angles and frameworks and inch toward doing better, rather than assume there’s a single correct approach.”
Ensuring research advances not just quickly, but responsibly, motivates Wendy. “I love that I get to think, read and write for a living - and that it connects me to something bigger than myself,” she says. “This work matters because it helps science do what it’s meant to do: serve people.”
