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2023 ACMG Annual Clinical Genetics Meeting Digital ...
'I would have had no idea': families' experiences ...
'I would have had no idea': families' experiences with a new U.S. health system-mediated direct contact program
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Pdf Summary
A new health system program funded by the National Human Genome Research Institute aimed to help families in the United States share genetic test results with their relatives. The program involved a genetic counselor offering to contact relatives directly. The study conducted semi-structured phone interviews with probands (individuals who underwent genetic testing) and their relatives. The analysis of the interviews revealed that the direct contact program was generally acceptable, and no adverse experiences were reported. The probands and relatives valued the support of the program in reaching at-risk relatives who otherwise may not have learned about their genetic test results. The program also had additional benefits, including reducing the burden on probands, leading to more family discussions, prompting additional screening, and notifying relatives who would not have otherwise known about the results. The study is planning further analysis to assess genetic testing uptake in relatives, testing outcomes, and the impact on family communication. Overall, the program was seen as helpful and relieved the probands of the responsibility of contacting their relatives about the test results. The program also facilitated difficult conversations between family members and provided valuable information for their healthcare decisions.
Asset Subtitle
Co-Author - Paula R. Blasi, MPH; Co-Author - Jamilyn M. Zepp, MS, CGC; Co-Author - Aaron Scrol, MS; Co-Author - Melissa L. Anderson, MS; Co-Author - John J. Ewing, BS; Co-Author - James Ralston, MD; Co-Author - Stephanie M. Fullerton, PhD; Co-Author - Kathleen A. Leppig, MD; Presenting Author - Nora B. Henrikson, PhD, MPH;
Meta Tag
Counseling
Ethical Legal and Social Issues
Genetic Testing
Co-Author
Paula R. Blasi, MPH
Co-Author
Jamilyn M. Zepp, MS, CGC
Co-Author
Aaron Scrol, MS
Co-Author
Melissa L. Anderson, MS
Co-Author
John J. Ewing, BS
Co-Author
James Ralston, MD
Co-Author
Stephanie M. Fullerton, PhD
Co-Author
Kathleen A. Leppig, MD
Presenting Author
Nora B. Henrikson, PhD, MPH
Keywords
health system program
genetic test results
genetic counselor
direct contact program
adverse experiences
family discussions
additional screening
genetic testing uptake
family communication
healthcare decisions
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