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Using a genetic test result in the care of family members: how does the duty of confidentiality apply

Using a genetic test result in the care of family members: how does the duty of confidentiality apply
Using a genetic test result in the care of family members: how does the duty of confidentiality apply
The use of genetic and genomic testing is becoming more widespread in healthcare and more inherited explanations for family history of diseases or conditions are being uncovered. Currently, relevant genetic information is not always used in the care of family members who might benefit from it, because of health professionals' fears of inappropriately breaching another family member's confidence. Such examples are likely to increase as testing possibilities expand. Here we present the case for use of familial information in the care and treatment of family members. We argue that whilst a clinical diagnosis in person A is confidential, the discovery of a familial factor that led to this diagnosis should be available for use in depersonalised form by health professionals to inform the testing and clinical care of other family members. The possibility of such use should be made clear in clinical practice at the time of initial testing, but should not require consent from the person in whom the familial factor was first identified. We call for further debate on these questions in the wake of high profile non-disclosure of genetic information cases, and forthcoming Data Protection legislation changes
1769-7212
Parker, Michael
d012a2b8-d4f7-49c1-beca-d69705c2ee43
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Parker, Michael
d012a2b8-d4f7-49c1-beca-d69705c2ee43
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5

Parker, Michael and Lucassen, Anneke (2018) Using a genetic test result in the care of family members: how does the duty of confidentiality apply. European Journal of Medical Genetics. (doi:10.1038/s41431-018-0138-y).

Record type: Article

Abstract

The use of genetic and genomic testing is becoming more widespread in healthcare and more inherited explanations for family history of diseases or conditions are being uncovered. Currently, relevant genetic information is not always used in the care of family members who might benefit from it, because of health professionals' fears of inappropriately breaching another family member's confidence. Such examples are likely to increase as testing possibilities expand. Here we present the case for use of familial information in the care and treatment of family members. We argue that whilst a clinical diagnosis in person A is confidential, the discovery of a familial factor that led to this diagnosis should be available for use in depersonalised form by health professionals to inform the testing and clinical care of other family members. The possibility of such use should be made clear in clinical practice at the time of initial testing, but should not require consent from the person in whom the familial factor was first identified. We call for further debate on these questions in the wake of high profile non-disclosure of genetic information cases, and forthcoming Data Protection legislation changes

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s41431-018-0138-y - Version of Record
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More information

Accepted/In Press date: 2 March 2018
e-pub ahead of print date: 27 April 2018

Identifiers

Local EPrints ID: 420334
URI: https://eprints.soton.ac.uk/id/eprint/420334
ISSN: 1769-7212
PURE UUID: e358f045-86d1-4005-b573-61eccaec02bc

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Date deposited: 04 May 2018 16:30
Last modified: 13 Mar 2019 18:32

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Contributors

Author: Michael Parker
Author: Anneke Lucassen

University divisions

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