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Timing and context: important considerations in the return of genetic results to research participants

Abstract

General consensus exists that clinically significant germline genetic research results should be fed back to research participants. A body of literature is emerging about Australian research participants' experiences of feedback of genetic research results and factors that influence a participant's actions after receiving such information. This exploratory qualitative study conducted interviews with 11 participants from the International Sarcoma Kindred Study, four probands and seven of their relatives. They had been informed by letter of the availability of clinically significant germline TP53 mutations identified through research. We examined the participants' views about the feedback of these genetic test results. Thematic (inductive) analysis was used to analyse the data. A number of factors influenced participants' responses following notification. This included participants' understanding of the notification letter and their perception of the relevance of the information for them and/or their family. Most notably, timing of the letter in the context of an individual's current life experiences was important. Timing and context are novel factors identified that may impact on research participants' understanding or their ability to access clinically significant research results. We outline strategies for disseminating results to research participants and their next of kin that may reduce their uncertainty around the receipt of research results.

Type Journal
ISBN 1868-310X (Print) 1868-310X (Linking)
Authors McBride, K. A.; Hallowell, N.; Tattersall, M. H.; Kirk, J.; Ballinger, M. L.; Thomas, D. M.; Mitchell, G.; Young, M. A.;
Publisher Name Journal of Community Genetics
Published Date 2016-01-01 00:00:00
Published Volume 7
Published Issue 1
Published Pages 11-20
URL http://www.ncbi.nlm.nih.gov/pubmed/26004130
Status Published In-print
OpenAccess Link https://publications.gimr.garvan.org.au/download.php?13037_13523/2016-McBride-J Community Genet.pdf