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Carrier testing of adults provides information about the risk of passing a genetic mutation to your children, leading to reproductive (and some say, eugenic) decisions. Excessive carrier screening may have adverse effects, but it can also prevent suffering and open up new reproductive options. Raz's study focuses on the interplay of community genetics (the medical organisation of carrier screening) and genetic alliances (networks of individuals at risk), exploring how 'genetic communities' are emerging both within existing ethnic groups and around patients' organisations. While the interplay between carrier testing, reproduction and eugenics has sparked many discussions, this study provides a novel and much-needed perspective on its actual implementation and interpretation by community members. Conflating a cross-cultural spectrum of genetic communities, the benefits and perils of supporting (or restricting) carrier screening are located within broader social issues such as religion, ethnicity, multiculturalism, abortion, stigmatisation, suffering and care-giving. While carrier screening emerges as ultimately a morally justified pronatalist endeavour for the reduction of suffering, thus being different in principle from the 'old' eugenics, it can also carry unintended adverse consequences if left unattended to consumers, communities or health professionals.

Community health services --- Genetic screening --- Social aspects

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Corporate culture --- Emotions --- Psychology, Industrial

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This book is a comprehensive, empirically-grounded exploration of the relationship between bioethics, culture, and the perspective of being affected. It provides a new outlook on how complex “bioethical” issues become questions of everyday life. The authors focus on two contexts, genetic testing and end-of-life care, to locate and demonstrate emerging themes of responsibility, such as self-responsibility, responsibility for kin, and the responsibility of society. Within these themes, the duty to know versus the right not to know one's genetic fate (in the context of genetic testing), or the sanctity of life versus self-determination (in the context of end of life care) are identified as culturally embedded dilemmas that are very much relevant for lay persons. Furthermore, cultural factors such as religion, history, utopian and dystopian views of biomedical technologies, outlooks on the body and on health/illness, and citizenship are examined. Health issues are increasingly becoming a question of assessing risk and responsibility: How can we better prepare ourselves for the future? We all make such assessments in a way that combines personal inclinations, professional recommendations, and cultural framings. There is still much to be learned about the interplay between these three dimensions. .

Philosophy. --- Human genetics. --- Ethics. --- Medical ethics. --- Theory of Medicine/Bioethics. --- Human Genetics. --- Euthanasia --- Bioethics. --- Moral and ethical aspects --- Biology --- Biomedical ethics --- Life sciences --- Life sciences ethics --- Assisted death (Euthanasia) --- Assisted dying (Euthanasia) --- Death, Assisted (Euthanasia) --- Death, Mercy --- Dying, Assisted (Euthanasia) --- Killing, Mercy --- Mercy death --- Mercy killing --- Science --- Homicide --- Medical ethics --- Assisted suicide --- Right to die --- Genetics --- Heredity, Human --- Human biology --- Physical anthropology --- Clinical ethics --- Ethics, Medical --- Health care ethics --- Medical care --- Medicine --- Bioethics --- Professional ethics --- Nursing ethics --- Social medicine --- Deontology --- Ethics, Primitive --- Ethology --- Moral philosophy --- Morality --- Morals --- Philosophy, Moral --- Science, Moral --- Philosophy --- Values