title: 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.
authors.affiliation: School of Public Health, Sydney Medical School, Camperdown, NSW, 2006, Australia. kate.mcbride@sydney.edu.au.|The Familial Cancer Service, Crown Princess Mary Cancer Centre, Westmead, NSW, 2145, Australia. kate.mcbride@sydney.edu.au.
authors.forename: Kate A
authors.initials: KA
authors.lastname: McBride
authors.affiliation: Centre for Health and Society, University of Melbourne, Parkville, VIC, 3052, Australia.
authors.forename: Nina
authors.initials: N
authors.lastname: Hallowell
authors.affiliation: Department of Cancer Medicine, Sydney Medical School, Royal Prince Alfred Hospital, Camperdown, NSW, 2006, Australia.
authors.forename: Martin H N
authors.initials: MH
authors.lastname: Tattersall
authors.affiliation: The Familial Cancer Service, Crown Princess Mary Cancer Centre, Westmead, NSW, 2145, Australia.
authors.forename: Judy
authors.initials: J
authors.lastname: Kirk
authors.affiliation: Research Division, Peter MacCallum Cancer Centre, East Melbourne, VIC, 3002, Australia.|Sir Peter MacCallum Department of Oncology, University of Melbourne, Parkville, VIC, 3052, Australia.
authors.forename: Mandy L
authors.initials: ML
authors.lastname: Ballinger
authors.affiliation: The Kinghorn Cancer Centre, Garvan Institute of Medical Research, Darlinghurst, NSW, 2010, Australia.
authors.forename: David M
authors.initials: DM
authors.lastname: Thomas
authors.affiliation: Sir Peter MacCallum Department of Oncology, University of Melbourne, Parkville, VIC, 3052, Australia.|Familial Cancer Centre, Peter MacCallum Cancer Centre, East Melbourne, VIC, 3002, Australia.
authors.forename: Gillian
authors.initials: G
authors.lastname: Mitchell
authors.affiliation: Familial Cancer Centre, Peter MacCallum Cancer Centre, East Melbourne, VIC, 3002, Australia.
authors.forename: Mary-Anne
authors.initials: MA
authors.lastname: Young
keywords: Feedback; Genetics; Li-Fraumeni; Research results; Results disclosure; Sarcoma