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  1. Much More Than a Gene: Hereditary Breast and Ovarian Cancer, Reproductive Choices and Family Life. [REVIEW]Catherine Dekeuwer & Simone Bateman - 2013 - Medicine, Health Care and Philosophy 16 (2):231-244.
    This article presents the results of a study that investigates the way in which carriers of a mutation on the BRCA1 or the BRCA2 gene, associated with a high risk of breast and ovarian cancer, make their reproductive decisions. Using semi-structured interviews, the study explored the way in which these persons reflected on the acceptability of taking the risk of transmitting this mutation to the next generation, the arguments they used in favor or against taking that risk, and in the (...)
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  • Informed Decision Making About Predictive DNA Tests: Arguments for More Public Visibility of Personal Deliberations About the Good Life. [REVIEW]Marianne Boenink & Simone van der Burg - 2010 - Medicine, Health Care and Philosophy 13 (2):127-138.
    Since its advent, predictive DNA testing has been perceived as a technology that may have considerable impact on the quality of people’s life. The decision whether or not to use this technology is up to the individual client. However, to enable well considered decision making both the negative as well as the positive freedom of the individual should be supported. In this paper, we argue that current professional and public discourse on predictive DNA-testing is lacking when it comes to supporting (...)
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  • 23andMe: A New Two-Sided Data-Banking Market Model.Henri-Corto Stoeklé, Marie-France Mamzer-Bruneel, Guillaume Vogt & Christian Hervé - 2016 - BMC Medical Ethics 17 (1):1-11.
    BackgroundSince 2006, the genetic testing company 23andMe has collected biological samples, self-reported information, and consent documents for biobanking and research from more than 1,000,000 individuals, through a direct-to-consumer online genetic-testing service providing a genetic ancestry report and a genetic health report. However, on November 22, 2013, the Food and Drug Administration halted the sale of genetic health testing, on the grounds that 23andMe was not acting in accordance with federal law, by selling tests of undemonstrated reliability as predictive tests for (...)
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  • Genetic Testing for Breast Cancer Risk, From BRCA1/2 to a Seven Gene Panel: An Ethical Analysis.Erik Gustavsson, Giovanni Galvis & Niklas Juth - 2020 - BMC Medical Ethics 21 (1):1-8.
    Background Genetic testing is moving from targeted investigations of monogenetic diseases to broader testing that may provide more information. For example, recent health economic studies of genetic testing for an increased risk of breast cancer suggest that it is associated with higher cost-effectiveness to screen for pathogenic variants in a seven gene panel rather than the usual two gene test for variants in BRCA1 and BRCA2. However, irrespective of the extent to which the screening of the panel is cost-effective, there (...)
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  • Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.Deborah R. Gordon, Carmen Radecki Breitkopf, Marguerite Robinson, Wesley O. Petersen, Jason S. Egginton, Kari G. Chaffee, Gloria M. Petersen, Susan M. Wolf & Barbara A. Koenig - 2019 - AJOB Empirical Bioethics 10 (1):1-22.
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  • Familial Disclosure by Genetic Healthcare Professionals: A Useful but Sparingly Used Legal Provision in France.Benjamin Derbez, Antoine de Pauw, Dominique Stoppa-Lyonnet, Frédéric Galactéros & Sandrine de Montgolfier - 2019 - Journal of Medical Ethics 45 (12):811-816.
    Familial disclosure of genetic information is an important, long-standing ethical issue that still gives rise to much debate. In France, recent legislation has created an innovative and unprecedented procedure that allows healthcare professionals, under certain conditions, to disclose relevant information to relatives of a person carrying a deleterious genetic mutation. This article will analyse how HCPs in two medical genetics clinics have reacted to these new legal provisions and show how their reticence to inform the patients’ relatives on their behalf (...)
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  • The Concept of “Genetic Responsibility” and Its Meanings: A Systematic Review of Qualitative Medical Sociology Literature.Jon Leefmann, Manuel Schaper & Silke Schicktanz - 2017 - Frontiers in Sociology 18 (1):1-22.
    The acquisition of genetic information (GI) confronts both the affected individuals and healthcare providers with difficult, ambivalent decisions. Genetic responsibility (GR) has become a key concept in both ethical and socioempirical literature addressing how and by whom decision-making with respect to the morality of GI is approached. However, despite its prominence, the precise meaning of the concept of GR remains vague. Therefore, we conducted a systematic literature review on the usage of the concept of GR in qualitative, socioempirical studies, to (...)
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  • Patient and Family Trajectories of Mitochondrial Disease: Diversity, Uncertainty and Genetic Risk.Rebecca Dimond - 2013 - Life Sciences, Society and Policy 9 (1).
    Mitochondrial disease can be a devastating, degenerative illness, with limited treatment and no cure. Novel reproductive techniques involving mitochondria donation present an opportunity for women with mitochondrial disease to prevent the transmission of disease to her offspring. Current IVF techniques, such as pre-implantation genetic diagnosis, reduce but do not eliminate the risk for the child. However, knowledge of the contexts within which this disease is experienced and reproductive decisions are made is limited. This article draws on qualitative interviews with adult (...)
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  • Attitudes of Physicians and Patients Towards Disclosure of Genetic Information to Spouse and First-Degree Relatives: A Case Study From Turkey.Aslihan Akpinar & Nermin Ersoy - 2014 - BMC Medical Ethics 15 (1):39.
    When considering the principle of medical confidentiality, disclosure of genetic information constitutes a special case because of the impact that this information can have on the health and the lives of relatives. The aim of this study is to explore the attitudes of Turkish physicians and patients about sharing information obtained from genetic tests.
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  • Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing.Douglas K. Martin, Heather L. Greenwood & Jeff Nisker - 2010 - Health Care Analysis 18 (2):103-112.
    The purpose of this study was to explore the views of members of the general public regarding ethical issues in adult predictive genetic testing. The literature pertaining to ethical issues regarding to adult predictive genetic testing is largely restricted to the views of ‘experts’ who have emphasized informed consent, patent issues, and insurance discrimination. Occasionally the views of patients who have undergone genetic counselling and testing have been elicited, adding psychosocial and family issues. However, the general public has not had (...)
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  • Communication of Genetic Information Within Families: The Case for Familial Comity. [REVIEW]Angela Davey, Ainsley Newson & Peter O’Leary - 2006 - Journal of Bioethical Inquiry 3 (3):161-166.
    Advances in genetic technologies raise a multitude of ethical issues, some of which give rise to novel dilemmas for medical practice. One of the most controversial problems arising in clinical genetics is that of confidentiality and who may disclose genetic health information. This paper considers the question of when it is appropriate for health professionals to disclose clinically significant genetic information without patient consent. Existing ethical principles offer little guidance in relation to this issue. We build on suggestions that genetic (...)
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  • Genetic Counseling and Genetic Tests Ethical Challenges.Bereshneh Ah & Nejad As - 2015 - Journal of Clinical Research and Bioethics 6 (5).
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  • Furthering Injustices Against Women: Genetic Information, Moral Obligations, and Gender.Inmaculada de Melo-martín - 2006 - Bioethics 20 (6):301–307.