Journal article
The responses of research participants and their next of kin to receiving feedback of genetic test results following participation in the Australian Ovarian Cancer Study
N Hallowell, K Alsop, M Gleeson, A Crook, L Plunkett, D Bowtell, G Mitchell, MA Young
Genetics in Medicine | NATURE PUBLISHING GROUP | Published : 2013
DOI: 10.1038/gim.2012.154
Abstract
Purpose: The generation of clinically significant genetic data during research studies raises a number of ethical issues about the feedback of this information to research participants. Little is known about research participants' experiences of this practice.Methods:This qualitative interview study investigated research participants' (n = 10) or their nominated next of kin's (relatives) (n = 15) experiences of receiving BRCA1 and BRCA2 genetic test information following participation in the Australian Ovarian Cancer Study.Results:Interviewees had mixed responses to receiving feedback. The participants of the Australian Ovarian Cancer Study were more positive about receiving feedback, acknow..
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Awarded by National Health and Medical Research Council
Funding Acknowledgements
We thank all the AOCS participants, their relatives who took part in these interviews, and all the women who took part in the Australian Ovarian Cancer Study (AOCS). N.H. thanks the Centre for Health and Society at the University of Melbourne, kConfab, which accommodated and hosted her visit to Australia in 2011, and the Institute of Health & Society, Newcastle University, which granted her study leave. She also thanks Martin Richards for the interesting discussions about feedback. The AOCS was approved by the Human Research Ethics Committees at the Peter MacCallum Cancer Centre, Queensland Institute of Medical Research, University of Melbourne, New South Wales Cancer Council, the Cancer Council South Australia, the Cancer Foundation of Western Australia, and all participating hospitals. AOCS was supported by the US Army Medical Research and Materiel Command under DAMD17-01-1-0729, the Cancer Council Victoria, Queensland Cancer Fund, the Cancer Council New South Wales, the Cancer Council South Australia, the Cancer Foundation of Western Australia, the Cancer Council Tasmania, and the National Health and Medical Research Council of Australia (NHMRC; ID400413, ID40028). The entire study group can be found at http://www.aocstudy.org. The AOCS prevalence study was supported by the Ovarian Cancer Research Program of the US Department of Defense (W81XWH-08-1-0684 and W81XWH-08-1-0685), Cancer Australia (509303), and the Peter MacCallum Cancer Centre Foundation. We gratefully acknowledge the cooperation of the participating institutions in Australia, and also acknowledge the contribution of the study nurses, research assistants, and all clinical and scientific collaborators. Finally, we thank Sam Wake for her help with this interview study.