Abstract
Patients attending genetic clinics are often the main gatekeepers of information for other family members. There has been much debate about the circumstances under which professionals may have an obligation, or may be permitted, to pass on personal genetic information about their clients but without their consent to other family members. We report findings from the first prospective study investigating the frequency with which genetics professionals become concerned about the failure of clients to pass on such information to their relatives. In all, 12 UK and two Australian regional genetic services reported such cases over 12 months, including details of actions taken by professionals in response to the clients' failure to disclose information. A total of 65 cases of nondisclosure were reported, representing <1% of the genetic clinic consultations in the collaborating centres during the study period. These included 39 cases of the failure of parents not passing full information to their adult offspring, 22 cases where siblings or other relatives were not given information and four cases where information was withheld from partners – including former and prospective partners. Professionals reported clients' reasons for withholding information as complex, more often citing concern and the desire to shield relatives from distress rather than poor family relationships. In most cases, the professionals took further steps to persuade their clients to make a disclosure but in no instance did the professional force a disclosure without the client's consent.
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Acknowledgements
We thank Drs Oonagh Corrigan and Bryn Williams-Jones for helpful comments on an earlier draft of this paper. This was an unfunded study carried out by clinicians and academic colleagues while they were engaged in their regular professional activities; all the authors thank their many colleagues for the care and trouble they took in providing the data. During this study, Angus Clarke was supported in part by a grant from the Wellcome Trust.
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Collaborators: Ahmad A, West Midlands Regional Clinical Genetics Unit, Birmingham Women's Hospital, Edgbaston, Birmingham B15 2TG, UK.Brennan P, Teesside Genetics Unit, James Cook University Hospital, Marton Rd., Middlesborough TS4 3BW, UK.Lynch SA, formerly Department of Human Genetics, International Centre for Life, Newcastle upon Tyne, UK (now National Centre for Medical Genetics, Our Lady's Hospital for Sick Children, Crumlin, Dublin 12, Eire).Wiles V, Department of Medical Genetics, Addenbrookes NHS Trust, Hills Rd., Cambridge CB2 2QQ, UK.Zukowska-Wilcocks A, Yorkshire Regional Genetic Service, Department of Clinical Genetics, Ashley Wing, St James University Hospital, Leeds LS9 7TF, UK
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Clarke, A., Richards, M., Kerzin-Storrar, L. et al. Genetic professionals' reports of nondisclosure of genetic risk information within families. Eur J Hum Genet 13, 556–562 (2005). https://doi.org/10.1038/sj.ejhg.5201394
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DOI: https://doi.org/10.1038/sj.ejhg.5201394
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