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Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research

Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research
Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research
Purpose: the extent of the responsibility of health-care professionals (HCPs) to ensure that patients’ relatives are told of their risk is unclear. Current international guidelines take confidentiality to the individual patient as the default position, but some suggest that disclosure could be default and genetic information could be conceptualized as familial.

Methods: our systematic review and synthesis of 17 studies explored the attitudes of HCPs, patients, and the public regarding the extent of HCPs’ responsibility to relatives with respect to disclosure.

Results: health-care professionals generally felt a responsibility to patients’ relatives but perceived a variety of reasons why it would be difficult to act on this responsibility. Public/patient views were more wide-ranging. Participants identified several competing and overlapping arguments for and against HCP disclosure: guidelines do not permit/mandate it, privacy, medical benefit, impact on family dynamics, quality of communication, and respecting autonomy.

Conclusion: we argue that HCPs can sometimes share genetic information without breaching confidentiality and that they could factor into their considerations the potential harm to family dynamics of nondisclosure. However, we need more nuanced research about their responsibilities to relatives, particularly as genomic tests are used more frequently in clinical practice
duty to warn, ethical issues, genetic counseling, genetic testing, genomics
1098-3600
1-12
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Shkedi-Rafid, Shiri
0f4001fe-e41a-4b33-9afc-67ef298b7172
Crawford, Gillian
c49ec103-2936-4897-8f25-96abe25b3a9f
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Shkedi-Rafid, Shiri
0f4001fe-e41a-4b33-9afc-67ef298b7172
Crawford, Gillian
c49ec103-2936-4897-8f25-96abe25b3a9f
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5

Dheensa, Sandi, Fenwick, Angela, Shkedi-Rafid, Shiri, Crawford, Gillian and Lucassen, Anneke (2015) Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research. Genetics in Medicine, 1-12. (doi:10.1038/gim.2015.72). (PMID:26110233)

Record type: Article

Abstract

Purpose: the extent of the responsibility of health-care professionals (HCPs) to ensure that patients’ relatives are told of their risk is unclear. Current international guidelines take confidentiality to the individual patient as the default position, but some suggest that disclosure could be default and genetic information could be conceptualized as familial.

Methods: our systematic review and synthesis of 17 studies explored the attitudes of HCPs, patients, and the public regarding the extent of HCPs’ responsibility to relatives with respect to disclosure.

Results: health-care professionals generally felt a responsibility to patients’ relatives but perceived a variety of reasons why it would be difficult to act on this responsibility. Public/patient views were more wide-ranging. Participants identified several competing and overlapping arguments for and against HCP disclosure: guidelines do not permit/mandate it, privacy, medical benefit, impact on family dynamics, quality of communication, and respecting autonomy.

Conclusion: we argue that HCPs can sometimes share genetic information without breaching confidentiality and that they could factor into their considerations the potential harm to family dynamics of nondisclosure. However, we need more nuanced research about their responsibilities to relatives, particularly as genomic tests are used more frequently in clinical practice

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More information

Accepted/In Press date: 20 April 2015
e-pub ahead of print date: 25 June 2015
Published date: 25 June 2015
Keywords: duty to warn, ethical issues, genetic counseling, genetic testing, genomics
Organisations: Faculty of Medicine

Identifiers

Local EPrints ID: 378509
URI: http://eprints.soton.ac.uk/id/eprint/378509
ISSN: 1098-3600
PURE UUID: c32b6c01-5027-4851-a355-8c9f26a7cbc9
ORCID for Anneke Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

Catalogue record

Date deposited: 06 Jul 2015 11:15
Last modified: 18 Feb 2021 16:58

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Contributors

Author: Sandi Dheensa
Author: Angela Fenwick
Author: Shiri Shkedi-Rafid
Author: Anneke Lucassen ORCID iD

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