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

doi:10.1038/sj.ejhg.5201394

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

School of Medicine, Dentistry and Biomedical Sciences

Research output: Contribution to journal › Article › peer-review

108 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 language	English
Pages (from-to)	556-562
Number of pages	7
Journal	European Journal of Human Genetics
Volume	13
Issue number	5
DOIs	https://doi.org/10.1038/sj.ejhg.5201394
Publication status	Published - May 2005

ASJC Scopus subject areas

Genetics(clinical)

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10.1038/sj.ejhg.5201394

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Clarke, A., Richards, M., Kerzin-Storrar, L., Halliday, J., Young, M. A., Simpson, S. A., Featherstone, K., Forrest, K., Lucassen, A., Morrison, P., Quarrell, O. W. J., & Stewart, H. (2005). Genetic professionals' reports of nondisclosure of genetic risk information within families. European Journal of Human Genetics, 13(5), 556-562. https://doi.org/10.1038/sj.ejhg.5201394

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AU - Young, M.A.

AU - Simpson, S.A.

AU - Featherstone, K.

AU - Forrest, K.

AU - Lucassen, A.

AU - Morrison, Patrick

AU - Quarrell, O.W.J.

AU - Stewart, H.

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

Abstract

ASJC Scopus subject areas

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