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Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information

Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information
Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information
Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing—BRCA1/2 mutation searching—this paper describes how women, previously diagnosed with breast/ovarian cancer, perceive their role in generating genetic information about themselves and their families. It observes that when describing their motivations for undergoing DNA testing and their experiences of disclosing genetic information within the family these women provide care based ethical justifications for their actions. Finally, it argues that generating genetic information and disclosing this information to kin raise different types of ethical issues. The implications of these findings for ethical debates about informed choice in the context of genetic testing are discussed.
BRCA1, 2 testing, mutation searching, care based ethics, qualitative study, informed consent
1473-4257
74-83
Hallowell, N.
46e75a41-5a17-4e2c-8bc7-d321902d655d
Foster, C.
59d1342e-92d7-4ce8-9491-01d5be716e2d
Eeles, R.
c7ae2359-6f49-4f42-88f8-a241570f9d4f
Arden-Jones, A.
07759307-f0c6-4ec2-8081-479a85061229
Murday, V.
0470cfd9-cb74-4f32-96be-ed0f5620c896
Watson, M.
168c5230-279a-4c51-9065-eefcd18191fa
Hallowell, N.
46e75a41-5a17-4e2c-8bc7-d321902d655d
Foster, C.
59d1342e-92d7-4ce8-9491-01d5be716e2d
Eeles, R.
c7ae2359-6f49-4f42-88f8-a241570f9d4f
Arden-Jones, A.
07759307-f0c6-4ec2-8081-479a85061229
Murday, V.
0470cfd9-cb74-4f32-96be-ed0f5620c896
Watson, M.
168c5230-279a-4c51-9065-eefcd18191fa

Hallowell, N., Foster, C., Eeles, R., Arden-Jones, A., Murday, V. and Watson, M. (2003) Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information. Journal of Medical Ethics, 29, 74-83.

Record type: Article

Abstract

Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing—BRCA1/2 mutation searching—this paper describes how women, previously diagnosed with breast/ovarian cancer, perceive their role in generating genetic information about themselves and their families. It observes that when describing their motivations for undergoing DNA testing and their experiences of disclosing genetic information within the family these women provide care based ethical justifications for their actions. Finally, it argues that generating genetic information and disclosing this information to kin raise different types of ethical issues. The implications of these findings for ethical debates about informed choice in the context of genetic testing are discussed.

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More information

Published date: 2003
Keywords: BRCA1, 2 testing, mutation searching, care based ethics, qualitative study, informed consent

Identifiers

Local EPrints ID: 9664
URI: http://eprints.soton.ac.uk/id/eprint/9664
ISSN: 1473-4257
PURE UUID: 2c4912b9-7446-4122-a0fc-f2a4b7893c34

Catalogue record

Date deposited: 04 Oct 2004
Last modified: 09 Jan 2022 01:21

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Contributors

Author: N. Hallowell
Author: C. Foster
Author: R. Eeles
Author: A. Arden-Jones
Author: V. Murday
Author: M. Watson

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