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Researchers’ views on return of incidental genomic research results: qualitative and quantitative findings

Klitzman, Robert L.; Appelbaum, Paul S.; Fyer, Abby; Martinez, Josue Natanael; Buquez, Brigitte; Wynn, Julia; Waldman, Cameron R.; Phelan, Jo C.; Parens, Erik; Chung, Wendy K.

Purpose: Comprehensive genomic analysis including exome and genome sequencing is increasingly being utilized in research studies, leading to the generation of incidental genetic findings. It is unclear how researchers plan to deal with incidental genetic findings.

Methods: We conducted a survey of the practices and attitudes of 234 members of the US genetic research community and performed qualitative semistructured interviews with 28 genomic researchers to understand their views and experiences with incidental genetic research findings.

Results: We found that 12% of the researchers had returned incidental genetic findings, and an additional 28% planned to do so. A large majority of researchers (95%) believe that incidental findings for highly penetrant disorders with immediate medical implications should be offered to research participants. However, there was no consensus on returning incidental results for other conditions varying in penetrance and medical actionability. Researchers raised concerns that the return of incidental findings would impose significant burdens on research and could potentially have deleterious effects on research participants if not performed well. Researchers identified assistance needed to enable effective, accurate return of incidental findings.

Conclusion: The majority of the researchers believe that research participants should have the option to receive at least some incidental genetic research results.

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Also Published In

Title
Genetics in Medicine
DOI
https://doi.org/10.1038/gim.2013.87

More About This Work

Academic Units
Medicine
Pediatrics
Psychiatry
Sociomedical Sciences
Published Here
July 10, 2020