Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information * Commentary * Author's reply
Open Access
- 1 April 2003
- journal article
- research article
- Published by BMJ in Journal of Medical Ethics
- Vol. 29 (2) , 74-79
- https://doi.org/10.1136/jme.29.2.74
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
This publication has 20 references indexed in Scilit:
- Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information * Commentary * Author's replyJournal of Medical Ethics, 2003
- Concern for families and individuals in clinical geneticsJournal of Medical Ethics, 2003
- Genetic Testing for Women Previously Diagnosed with Breast/Ovarian Cancer: Examining the Impact of BRCA1 and BRCA2 Mutation SearchingGenetic Testing, 2002
- How Distinctive is Genetic Information?Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences, 2001
- Genetic Secrets and the FamilyMedical Law Review, 2001
- Shared decision making and non-directiveness in genetic counsellingJournal of Medical Genetics, 2000
- Doing the right thing: genetic risk and responsibilitySociology of Health & Illness, 1999
- Genetic Heterogeneity and Penetrance Analysis of the BRCA1 and BRCA2 Genes in Breast Cancer FamiliesAmerican Journal of Human Genetics, 1998
- Recommendations for Follow-up Care of Individuals With an Inherited Predisposition to CancerJAMA, 1997
- Localization of a Breast Cancer Susceptibility Gene, BRCA2 , to Chromosome 13q12-13Science, 1994