Genetic professionals' reports of nondisclosure of genetic risk information within families

A. Clarke, M. Richards, L. Kerzin-Storrar, J. Halliday, M.A. Young, S.A. Simpson, K. Featherstone, K. Forrest, A. Lucassen, Patrick Morrison, O.W.J. Quarrell, H. Stewart

Research output: Contribution to journalArticlepeer-review

93 Citations (Scopus)

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
Original languageEnglish
Pages (from-to)556-562
Number of pages7
JournalEuropean Journal of Human Genetics
Volume13
Issue number5
DOIs
Publication statusPublished - May 2005

ASJC Scopus subject areas

  • Genetics(clinical)

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