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Disclosure of genetic information to relatives: balancing confidentiality and relatives' interests.

Disclosure of genetic information to relatives: balancing confidentiality and relatives' interests.
Disclosure of genetic information to relatives: balancing confidentiality and relatives' interests.
A recent English court decision raises an issue clinicians increasingly face, namely whether, when and how a patient’s genetic information should be communicated to at-risk relatives. In ABC v St. Georges Healthcare NHS Trust, a patient, diagnosed with Huntington’s disease (HD), refused consent to disclose this diagnosis to his daughter.1 The daughter knew her father was ill but not that its cause was heritable. When she discovered she was pregnant, she told her father’s clinicians. They considered disclosure to her, but since the patient insisted that his diagnosis should not be communicated to her, his refusal was respected. Sometime later the daughter was accidentally informed by her father’s clinician that he suffered from HD, so she herself underwent testing and was found to have inherited the condition. She brought a claim against her father’s clinicians for failure to inform her about his diagnosis when she was pregnant, claiming that she would have terminated her pregnancy if she tested positive, an opportunity denied to her because of non-disclosure. The English High Court struck out the claim prior to a full trial, stating that there was no duty of care to the daughter. However, in May 2017, the Court of Appeal overturned this decision and acknowledged that in principle clinicians practising genetics may owe a duty to warn a patient’s relatives.

Tensions around confidentiality and responsibilities to others are well described in practices around, for example, sexually transmitted diseases, yet in medical practice involving heritable risks, the prevailing discourse remains one that gives prominence to patient confidentiality. As genetics enters mainstream medical practice, knowing when it might be appropriate to alert relatives about heritable risks becomes an issue for medical practice in general. We argue that preserving confidences about clinical information, while informing relatives of a familial risk, is possible and should be more widely adopted
0022-2593
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Gilbar, Roy
5666bec9-85e1-40c4-b2a2-44b03866728d
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Gilbar, Roy
5666bec9-85e1-40c4-b2a2-44b03866728d

Lucassen, Anneke and Gilbar, Roy (2017) Disclosure of genetic information to relatives: balancing confidentiality and relatives' interests. Journal of Medical Genetics. (doi:10.1136/jmedgenet-2017-104843).

Record type: Article

Abstract

A recent English court decision raises an issue clinicians increasingly face, namely whether, when and how a patient’s genetic information should be communicated to at-risk relatives. In ABC v St. Georges Healthcare NHS Trust, a patient, diagnosed with Huntington’s disease (HD), refused consent to disclose this diagnosis to his daughter.1 The daughter knew her father was ill but not that its cause was heritable. When she discovered she was pregnant, she told her father’s clinicians. They considered disclosure to her, but since the patient insisted that his diagnosis should not be communicated to her, his refusal was respected. Sometime later the daughter was accidentally informed by her father’s clinician that he suffered from HD, so she herself underwent testing and was found to have inherited the condition. She brought a claim against her father’s clinicians for failure to inform her about his diagnosis when she was pregnant, claiming that she would have terminated her pregnancy if she tested positive, an opportunity denied to her because of non-disclosure. The English High Court struck out the claim prior to a full trial, stating that there was no duty of care to the daughter. However, in May 2017, the Court of Appeal overturned this decision and acknowledged that in principle clinicians practising genetics may owe a duty to warn a patient’s relatives.

Tensions around confidentiality and responsibilities to others are well described in practices around, for example, sexually transmitted diseases, yet in medical practice involving heritable risks, the prevailing discourse remains one that gives prominence to patient confidentiality. As genetics enters mainstream medical practice, knowing when it might be appropriate to alert relatives about heritable risks becomes an issue for medical practice in general. We argue that preserving confidences about clinical information, while informing relatives of a familial risk, is possible and should be more widely adopted

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More information

Accepted/In Press date: 10 October 2017
e-pub ahead of print date: 10 November 2017
Published date: 10 November 2017

Identifiers

Local EPrints ID: 415611
URI: http://eprints.soton.ac.uk/id/eprint/415611
ISSN: 0022-2593
PURE UUID: 4a59b1a8-1649-45f2-9363-83e1f4a7003c
ORCID for Anneke Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

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Date deposited: 16 Nov 2017 17:30
Last modified: 16 Mar 2024 03:23

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Contributors

Author: Anneke Lucassen ORCID iD
Author: Roy Gilbar

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