Journal article

Connecting patients, researchers and clinical genetics services: the experiences of participants in the Australian Ovarian Cancer Study (AOCS)

Ashley Crook, Loren Plunkett, Laura E Forrest, Nina Hallowell, Samantha Wake, Kathryn Alsop, Margaret Gleeson, David Bowtell, Gillian Mitchell, Mary-Anne Young

EUROPEAN JOURNAL OF HUMAN GENETICS | NATURE PUBLISHING GROUP | Published : 2015

Abstract

Population-based genetic research may produce information that has clinical implications for participants and their family. Researchers notify participants or their next of kin (NoK) about the availability of genetic information via a notification letter; however, many subsequently do not contact a family cancer centre (FCC) to clarify their genetic status. Therefore, the purpose of this study was to examine research participants' experience of receiving a notification letter and the factors that influenced contact with an FCC. Twenty-five semi-structured interviews were conducted with research participants (n=10) or their NoK (n=15) who had received a notification letter following participa..

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Grants

Awarded by US Army Medical Research and Materiel Command


Awarded by National Health and Medical Research Council of Australia (NHMRC)


Awarded by Ovarian Cancer Research Program of the US Department of Defense


Awarded by Cancer Australia


Funding Acknowledgements

We thank all the women who participated in AOCS, particularly the women and their relatives who took part in the psychosocial study. 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, ID400281). The full study group can be found at 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), the Cancer Council Victoria and the Peter MacCallum Cancer Centre Foundation. We gratefully acknowledge the cooperation of the participating institutions in Australia and also the contribution of the study nurses, research assistants and all clinical and scientific collaborators. The complete AOCS study group can be found at www.aocstudy.org.