Dheensa & Ors have published an open access paper in the Journal of Medical Ethics on patients’ views about consent, confidentiality and information sharing in genetic medicine.
The paper reports the outcome of a survey suggesting that patients had fewer concerns about sharing information than did health care providers.
The authors commented:
In line with the joint account approach, our interviewees considered their signs, symptoms, and diagnoses as personal, but thought genetic risk was familial and that their relatives needed to know about it. This joint account approach appeared more intuitive to patients than HCPs whom we also interviewed in our wider research. Participants were more inclined than HCPs to think of risks as meriting urgent disclosure even if the cancer was unlikely to arise for some years. They were also more likely to say relatives should be told about risks for which there are no interventions (treatments, screens), because knowing could help them plan their lives.