Ms Jane Tiller1,2
1Australian Genomics
2Monash University
Background: Genomic risk information for medically-actionable conditions has relevance for patients’ blood relatives. However, cascade testing uptake in at-risk families is <50%, and the burden of contacting relatives is a significant barrier. Health professionals (HPs) could notify at-risk relatives directly, with patients’ consent. This practice is supported by international literature, including strong public support. However, there is little exploration of the Australian public’s views about this issue.
Methods: We surveyed Australian adults using a consumer research company. Respondents were provided a hypothetical scenario and 2 different letters, and asked questions about views and preferences regarding being hypothetically contacted directly by HPs.
Results: Overall, 1026 members of the public responded, with median age 45y and 51% female. Eighty-four percent would want to be contacted about genomic risk for future health problems that can be prevented or detected/treated early. The majority (67%) preferred a letter that included specific information about the genetic condition in the family, and most (85%) had no privacy concerns about HPs sending a letter using contact details provided by a relative. A minority (<5%) had significant privacy concerns, mostly about use of personal contact information. Concerns included ensuring information was not shared with third parties. Almost 50% would prefer that a family member contacted them before the letter was sent, while about half did not prefer this or were unsure.
Conclusion: The Australian public is supportive of direct notification of relatives at risk of medically-actionable genomic conditions. Guidelines would assist with clarifying clinicians’ discretion in this area.
Biography:
Jane (LLB(Hons)/BSc/MGenCouns) is a lawyer and genetic counsellor with a background in corporate law and a keen interest in the regulatory and ethical aspects of genomics and public health. She is Senior Project Coordinator with Australian Genomics and Ethical, Legal and Social Adviser in Public Health Genomics at Monash University.