An update from the Focus Group Study seeking participant views about receiving their genetic risk information for cancer
In our 2024 ABC Study newsletter, we explained the ethical responsibility of research studies to return clinically actionable genetic results to study participants. While this will only be relevant to a small number of participants, we offer to do this when the result may put them at significantly higher risk of disease and there are proven ways to reduce that, or detect the disease early, or there are new options for treatment.
In that newsletter, we also invited ABC Study participants to take part in focus groups to discuss how people feel about learning personal genetic risk information from research.
We received a great response, with 22 ABC Study participants taking part in the discussions. These focus groups were held at the end of 2024 by our research collaborators at The University of Melbourne. The discussions focused on people's views about learning genomic risk results of developing breast and prostate cancer from a research study.
Study participants expressed concern about forgetting they're in a long-term study without regular reminders like newsletters. Participants also expressed their desire to be able to change their mind over time about what results they receive.
This feedback helps us better understand what matters most to our study participants when it comes to personal genetic risk information. We will use these insights to inform how we communicate with and support ABC Study participants and their family members if we discover genetic risk information relevant to them in the future.
Thank you again to everyone who took part in the focus groups—and to all our participants for your ongoing support of the ABC Study. For those who may be concerned about genetic risk information, we wish to confirm that if we were to find results relevant to an individual’s health, we have protocols in place to ensure those who wish to be notified will be notified. We encourage you to keep your contact details and the details of your Next of Kin up to date on the ABC Study website.
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