Authors
Angus Clarke, Martin Richards, Lauren Kerzin-Storrar, Jane Halliday, Mary Anne Young, Sheila A Simpson, Katie Featherstone, Karen Forrest, Anneke Lucassen, Patrick J Morrison, Oliver WJ Quarrell, Helen Stewart
Publication date
2005/5
Journal
European Journal of Human Genetics
Volume
13
Issue
5
Pages
556-562
Publisher
Nature Publishing Group
Description
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 …
Total citations
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Scholar articles
A Clarke, M Richards, L Kerzin-Storrar, J Halliday… - European Journal of Human Genetics, 2005