The Ethics Round is a new podcast from the NIHR Biomedical Research Centre at the University of Southampton which takes a deep dive into the ethical issues in modern healthcare. In episode 1 Research Podcasts’ own Chris Garrington talks with Dr Lisa Ballard and Professor Anneke Lucassen about their new research on interventions to help patients sharing genetic information with their at-risk relatives.
We’re increasingly in a position to be able to find that a patient who has been referred to us has a genetic or inherited predisposition to a disease like say, cancer. But by finding that out, we also know that their relatives might be at risk, and so we’ve had a long-standing question, what are our next steps? How do we handle that? Do we tell the person who we’re seeing well, you must tell your relatives? Do we have any obligation to find those relatives ourselves? What do we do about that familial communication? And so, it’s been really great for me that Lisa Ballard has been so interested in the health psychological aspects of this and trying to think of interventions that might help.
Professor Anneke Lucassen
The three begin by establishing the challenges faced by clinicians and patients surrounding sharing genetic test results. Anneke explains how from a clinical perspective, concerns about protecting patient confidentiality often prevent clinicians from pushing for the sharing of genetic test results with the patient’s relatives. On top of this the need to prioritise their own patient’s workload over chasing up relatives makes intervention in this area less likely. Lisa follows this by discussing the difficulties that often prevent patients from communicating with family members such as confusion over which relatives should be informed, problems within the family dynamics, how to communicate the news or feelings of guilt for ‘passing on’ a condition to a relative.
Chris then moves on to quiz Lisa on her recent systematic review of research in this area which found only 5 existing interventions aimed at encouraging patients to inform at risk relatives of their genetic information. Of these only 1 found improvement beyond usual care. The paper also found that both clinicians and patients desired greater intervention in this area. For Lisa the main findings of this research are a greater appreciation for the challenge of understanding and influencing patient behaviour in a clinical setting, that current interventions fail to improve the communication of genetic testing, that future interventions should incorporate the patient throughout the process.
Looking to the future Anneke discusses the recent release of guidelines for clinicians to deal with this challenge. She argues that clinicians must distinguish between information that is confidential to the patient, and information that is familial and so can be legitimately shared with others. While this is a potentially confusing distinction for clinicians to make it is possible to communicate familial information in an abstract way that does not threaten patient confidentiality and prioritises public health.
Lisa finishes by highlighting that future interventions must incorporate the patient from the start of the process and throughout to achieve success. She also argues that a better theoretical underpinning for interventions is needed to be able to understand what works, what doesn’t and why and begin to create a framework for success in this area.
Tune into episode 1 of The Ethics Round for insight into ethical and practical problems of sharing genetic test results with at risk relatives and discussion of real-life solutions to this complex issue. Subscribe to keep up to date with the latest ethical debates in modern health care.
The Ethics Round podcast is produced by Research Podcasts in collaboration with the NIHR Biomedical Research Centre at the University of Southampton.
Research Podcasts offer podcast consultancy, production and training for researchers and academics. Check out our various training workshops including an introduction to podcasting workshop, how to launch your podcast and our more advanced courses on podcast presenting, podcast editing, and how to build a podcast brand.
Freya Peake, Research and Administration Assistant at Research Podcasts