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

Genetic professionals' reports of nondisclosure of genetic risk information within families
Genetic professionals' reports of nondisclosure of genetic risk information within families
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.
confidentiality, disclosure, genetic information, genetic counselling
1018-4813
556-562
Clarke, Angus
30f3d3dd-3caa-4465-82e8-a8c4316dfaa1
Richards, Martin
4f3cc124-7e88-454a-9f8f-79c4715c2288
Kerzin-Storrar, Lauren
8b011ec4-772b-41c2-bd08-f8e2356977a2
Halliday, Jane
b9c40d4f-567b-4e05-896a-35a3c82d16fd
Young, Mary Anne
ae619731-28c2-47c8-8e76-bf15a500a1c2
Simpson, Sheila A.
e27ff8f2-1926-46b0-9dac-1cd894f7fce7
Featherstone, Katie
2bbc49e6-1ceb-4aff-8734-7b1f81f2339b
Forrest, Karen
0b857226-b432-493d-8582-6549ca3aa66c
Lucassen, Anneke
3f282fe4-b839-443c-8c81-6b8a507153c7
Morrison, Patrick J.
0fb9bdda-83c3-446b-ae97-28858f06d2d8
Quarrell, Oliver W.J.
f28de12d-fa22-4eba-a8e6-c0dfeaa9bf16
Stewart, Helen
f0a57ec9-3e87-4331-bf44-e00f32c432dd
Clarke, Angus
30f3d3dd-3caa-4465-82e8-a8c4316dfaa1
Richards, Martin
4f3cc124-7e88-454a-9f8f-79c4715c2288
Kerzin-Storrar, Lauren
8b011ec4-772b-41c2-bd08-f8e2356977a2
Halliday, Jane
b9c40d4f-567b-4e05-896a-35a3c82d16fd
Young, Mary Anne
ae619731-28c2-47c8-8e76-bf15a500a1c2
Simpson, Sheila A.
e27ff8f2-1926-46b0-9dac-1cd894f7fce7
Featherstone, Katie
2bbc49e6-1ceb-4aff-8734-7b1f81f2339b
Forrest, Karen
0b857226-b432-493d-8582-6549ca3aa66c
Lucassen, Anneke
3f282fe4-b839-443c-8c81-6b8a507153c7
Morrison, Patrick J.
0fb9bdda-83c3-446b-ae97-28858f06d2d8
Quarrell, Oliver W.J.
f28de12d-fa22-4eba-a8e6-c0dfeaa9bf16
Stewart, Helen
f0a57ec9-3e87-4331-bf44-e00f32c432dd

Clarke, Angus, Richards, Martin, Kerzin-Storrar, Lauren, Halliday, Jane, Young, Mary Anne, Simpson, Sheila A., Featherstone, Katie, Forrest, Karen, Lucassen, Anneke, Morrison, Patrick J., Quarrell, Oliver W.J. and Stewart, Helen (2005) Genetic professionals' reports of nondisclosure of genetic risk information within families. European Journal of Human Genetics, 13 (5), 556-562. (doi:10.1038/sj.ejhg.5201394).

Record type: Article

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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Published date: 2005
Keywords: confidentiality, disclosure, genetic information, genetic counselling

Identifiers

Local EPrints ID: 26248
URI: http://eprints.soton.ac.uk/id/eprint/26248
ISSN: 1018-4813
PURE UUID: b20ff090-afca-4b17-8cb6-238ba26312d6

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Date deposited: 20 Apr 2006
Last modified: 15 Jul 2019 19:14

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Contributors

Author: Angus Clarke
Author: Martin Richards
Author: Lauren Kerzin-Storrar
Author: Jane Halliday
Author: Mary Anne Young
Author: Sheila A. Simpson
Author: Katie Featherstone
Author: Karen Forrest
Author: Anneke Lucassen
Author: Patrick J. Morrison
Author: Oliver W.J. Quarrell
Author: Helen Stewart

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