'Is this knowledge mine and nobody else's? I don't feel that.' Patient views about consent, confidentiality and information-sharing in genetic medicine
'Is this knowledge mine and nobody else's? I don't feel that.' Patient views about consent, confidentiality and information-sharing in genetic medicine
In genetic medicine, a patient's diagnosis can mean their family members are also at risk, raising a question about how consent and confidentiality should function in clinical genetics. This question is particularly pressing when it is unclear whether a patient has shared information. Conventionally, healthcare professionals view confidentiality at an individual level and 'disclosure without consent' as the exception, not the rule. The relational joint account model, by contrast, conceptualises genetic information as confidential at the familial level and encourages professionals to take disclosure as the default position. In this study, we interviewed 33 patients about consent and confidentiality and analysed data thematically. Our first theme showed that although participants thought of certain aspects of genetic conditions-for example, the way they affect day-to-day health-as somewhat personal, they perceived genetic information-for example, the mutation in isolation-as familial. Most thought these elements were separable and thought family members had a right to know the latter, identifying a broad range of harms that would justify disclosure. Our second theme illustrated that participants nonetheless had some concerns about what, if any, implications there would be of professionals treating such information as familial and they emphasised the importance of being informed about the way their information would be shared. Based on these results, we recommend that professionals take disclosure as the default position, but make clear that they will treat genetic information as familial during initial consultations and address any concerns therein.
174-179
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
25 February 2016
Dheensa, Sandi
d7d7e2bb-8def-4fad-9e1d-33d8141a0c9c
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Dheensa, Sandi, Fenwick, Angela and Lucassen, Anneke
(2016)
'Is this knowledge mine and nobody else's? I don't feel that.' Patient views about consent, confidentiality and information-sharing in genetic medicine.
Journal of Medical Ethics, 42 (3), .
(doi:10.1136/medethics-2015-102781).
(PMID:26744307)
Abstract
In genetic medicine, a patient's diagnosis can mean their family members are also at risk, raising a question about how consent and confidentiality should function in clinical genetics. This question is particularly pressing when it is unclear whether a patient has shared information. Conventionally, healthcare professionals view confidentiality at an individual level and 'disclosure without consent' as the exception, not the rule. The relational joint account model, by contrast, conceptualises genetic information as confidential at the familial level and encourages professionals to take disclosure as the default position. In this study, we interviewed 33 patients about consent and confidentiality and analysed data thematically. Our first theme showed that although participants thought of certain aspects of genetic conditions-for example, the way they affect day-to-day health-as somewhat personal, they perceived genetic information-for example, the mutation in isolation-as familial. Most thought these elements were separable and thought family members had a right to know the latter, identifying a broad range of harms that would justify disclosure. Our second theme illustrated that participants nonetheless had some concerns about what, if any, implications there would be of professionals treating such information as familial and they emphasised the importance of being informed about the way their information would be shared. Based on these results, we recommend that professionals take disclosure as the default position, but make clear that they will treat genetic information as familial during initial consultations and address any concerns therein.
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J Med Ethics-2016-Dheensa-medethics-2015-102781.pdf
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Accepted/In Press date: 7 December 2015
e-pub ahead of print date: 7 January 2016
Published date: 25 February 2016
Organisations:
Cancer Sciences
Identifiers
Local EPrints ID: 385723
URI: http://eprints.soton.ac.uk/id/eprint/385723
ISSN: 1473-4257
PURE UUID: 9eab4e42-8e08-45d6-af54-77908f8d0345
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Date deposited: 21 Jan 2016 14:09
Last modified: 15 Mar 2024 03:11
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Author:
Sandi Dheensa
Author:
Angela Fenwick
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