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Journal of Medical Ethics
Article . 2003 . Peer-reviewed
Data sources: Crossref
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Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information

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

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

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.

Keywords

Adult, 610, Breast Neoplasms, Genetic Counseling, Truth Disclosure, Humans, Family, Genetic Privacy, Aged, Retrospective Studies, Ovarian Neoplasms, Social Responsibility, Informed Consent, Role, Middle Aged, 301, Mutation, Personal Autonomy, Female, Attitude to Health

  • BIP!
    Impact byBIP!
    citations
    This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    162
    popularity
    This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
    Top 10%
    influence
    This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    Top 1%
    impulse
    This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
    Top 10%
Powered by OpenAIRE graph
citations
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
162
Top 10%
Top 1%
Top 10%
bronze