Journal article

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

Kate A McBride, Nina Hallowell, Martin HN Tattersall, Judy Kirk, Mandy L Ballinger, David M Thomas, Gillian Mitchell, Mary-Anne Young

JOURNAL OF COMMUNITY GENETICS | SPRINGER HEIDELBERG | Published : 2016

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 t..

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Grants

Funding Acknowledgements

This study was funded by The Johanna Sewell Sarcoma Research Award to Mary-Anne Young, Nina Hallowell and Gillian Mitchell with a Postgraduate Scholarship for Kate McBride provided by the National Health and Medical Research Council, Australia.