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Patient and family trajectories of mitochondrial disease: diversity, uncertainty and genetic risk

Life Sciences, Society and Policy 9 (1) (2013)

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Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information.Nina Hallowell, Claire Foster, Ros Eeles, A. Ardern-Jones, Veronica Murday & Maggie Watson - 2003 - Journal of Medical Ethics 29 (2):74-79.details Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing—BRCA1/2mutation 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 (...) Download Export citation Bookmark 15 citations
Gender And The Human Genome.R. Chadwick - 2009 - Mens Sana Monographs 7 (1):10.details _Gender issues arise in relation to the human genome across a number of dimensions: the level of attention given to the nuclear genome as opposed to the mitochondrial; the level of basic scientific research; decision-making in the clinic related to both reproductive decision-making on the one hand, and diagnostic and predictive testing on the other; and wider societal implications. Feminist bioethics offers a useful perspective for addressing these issues._. Download Export citation Bookmark 2 citations
Experiences of Genetic Risk: Disclosure and the Gendering of Responsibility.Lori D’Agincourt-Canning - 2001 - Bioethics 15 (3):231-247.details The question of ‘who owns genetic information‘ is increasingly a focus of ethical inquiry. Applied to predictive testing, several recent critiques suggest that persons with a genetic disorder have a moral duty to disclose that information to other family members. The justification for this obligation is that genetic information belongs to and may benefit not only a single individual, but also members of a biological kinship. This paper considers this issue from a different vantage point: How does gender intersect with (...) Download Export citation Bookmark 3 citations
Ethics of modifying the mitochondrial genome.A. L. Bredenoord, W. Dondorp, G. Pennings & G. De Wert - 2011 - Journal of Medical Ethics 37 (2):97-100.details Recent preclinical studies have shown the feasibility of specific variants of nuclear transfer to prevent mitochondrial DNA disorders. Nuclear transfer could be a valuable reproductive option for carriers of mitochondrial mutations. A clinical application of nuclear transfer, however, would entail germ-line modification, more specifically a germ-line modification of the mitochondrial genome. One of the most prominent objections against germ-line modification is the fear that it would become possible to alter ‘essential characteristics’ of a future person, thereby possibly violating the child's (...) Download Export citation Bookmark 18 citations
Experiences of genetic risk: Disclosure and the gendering of responsibility.Lori D’Agincourt-Canning - 2001 - Bioethics 15 (3):231–247.details The question of ‘who owns genetic information‘ is increasingly a focus of ethical inquiry. Applied to predictive testing, several recent critiques suggest that persons with a genetic disorder have a moral duty to disclose that information to other family members. The justification for this obligation is that genetic information belongs to and may benefit not only a single individual, but also members of a biological kinship. This paper considers this issue from a different vantage point: How does gender intersect with (...) Download Export citation Bookmark 10 citations

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