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Development and pilot testing of a decision aid for genomic research participants notified of clinically actionable research findings for cancer risk


Germline genomic testing is increasingly used in research to identify genetic causes of disease, including cancer. However, there is evidence that individuals who are notified of clinically actionable research findings have difficulty making informed decisions regarding uptake of genetic counseling for these findings. This study aimed to produce and pilot test a decision aid to assist participants in genomic research studies who are notified of clinically actionable research findings to make informed choices regarding uptake of genetic counseling. Development was guided by published literature, the International Patient Decision Aid Standards, and the expertise of a steering committee of clinicians, researchers, and consumers. Decision aid acceptability was assessed by self-report questionnaire. All 19 participants stated that the decision aid was easy to read, clearly presented, increased their understanding of the implications of taking up research findings, and would be helpful in decision-making. While low to moderate levels of distress/worry were reported after reading the booklet, a majority of participants also reported feeling reassured. All participants would recommend the booklet to others considering uptake of clinically actionable research findings. Results indicate the decision aid is acceptable to the target audience, with potential as a useful decision support tool for genomic research participants.

Type Journal
ISBN 1059-7700
Authors Willis, A. M.; Smith, S. K.; Meiser, B.; Ballinger, M. L.; Thomas, D. M.; Tattersall, M.; Young, M. A.
Responsible Garvan Author Mary-Anne Young
Publisher Name Journal of Genetic Counseling
Published Date 2018-09-01
Published Volume 27
Published Issue 5
Published Pages 1055-1066
Status Published in-print
DOI 10.1007/s10897-018-0223-y