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| Author | : Bartha Maria Knoppers |
| Publisher | : Cowansville : Éditions Yvon Blais |
| Total Pages | : 482 |
| Release | : 1998 |
| Genre | : Bioethics |
| ISBN | : |
| Author | : Oonagh Corrigan |
| Publisher | : Routledge |
| Total Pages | : 228 |
| Release | : 2004-07-31 |
| Genre | : Social Science |
| ISBN | : 1134373341 |
Genetic Databases offers a timely analysis of the underlying tensions, contradictions and limitations of the current regulatory frameworks for, and policy debates about, genetic databases. Drawing on original empirical research and theoretical debates in the fields of sociology, anthropology and legal studies, the contributors to this book challenge the prevailing orthodoxy of informed consent and explore the relationship between personal privacy and the public good. They also consider the multiple meanings attached to human tissue and the role of public consultations and commercial involvement in the creation and use of genetic databases. The authors argue that policy and regulatory frameworks produce a representation of participation that is often at odds with the experiences and understandings of those taking part. The findings present a serious challenge for public policy to provide mechanisms to safeguard the welfare of individuals participating in genetic databases.
| Author | : Bartha Maria Knoppers |
| Publisher | : BRILL |
| Total Pages | : 668 |
| Release | : 2003-12-01 |
| Genre | : Law |
| ISBN | : 9047402936 |
Genetic research and testing is not limited to individuals and their families. Increasingly, there is focus on communities and even whole populations. This raises legal and socio-ethical and issues that have not been addressed. In this age of international biobanking involving populations, are current legal and ethical approaches sufficient? This book of selected papers covers population research and banking as well as accompanying confidentiality, and governance concerns. Possible commercialization, patents, benefit sharing, discrimination, and the role of patient organizations and of developing countries are also discussed. New perspectives and models are provided. The book concludes with a Statement of Principles on the Ethical Conduct of Human Genetic Research Involving Populations. Policymakers, academics, legislators and researchers will find this book to be current and controversial. The human genome may be mapped but the legal and socio-ethical debate is far from over.
| Author | : Institute of Medicine |
| Publisher | : National Academies Press |
| Total Pages | : 353 |
| Release | : 1994-01-01 |
| Genre | : Medical |
| ISBN | : 0309047986 |
Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.
| Author | : Samiran Nundy |
| Publisher | : Springer Nature |
| Total Pages | : 475 |
| Release | : 2021-10-23 |
| Genre | : Medical |
| ISBN | : 9811652481 |
This is an open access book. The book provides an overview of the state of research in developing countries – Africa, Latin America, and Asia (especially India) and why research and publications are important in these regions. It addresses budding but struggling academics in low and middle-income countries. It is written mainly by senior colleagues who have experienced and recognized the challenges with design, documentation, and publication of health research in the developing world. The book includes short chapters providing insight into planning research at the undergraduate or postgraduate level, issues related to research ethics, and conduct of clinical trials. It also serves as a guide towards establishing a research question and research methodology. It covers important concepts such as writing a paper, the submission process, dealing with rejection and revisions, and covers additional topics such as planning lectures and presentations. The book will be useful for graduates, postgraduates, teachers as well as physicians and practitioners all over the developing world who are interested in academic medicine and wish to do medical research.
| Author | : Irmgard Nippert |
| Publisher | : Springer Science & Business Media |
| Total Pages | : 168 |
| Release | : 2012-12-06 |
| Genre | : Medical |
| ISBN | : 3642584861 |
ciples and recommendations on genetic service provision in a multidisciplinary way. At the workshop the main issues and principles that are presently emerging as integral parts of national and international recommendations on genetic service provision such as: - voluntary provision of services - protection of choices - patient autonomy - informed consent - nondirective counseling - confidentiality were discussed and the participants tried to assess how these principles are known, met or violated in practice according to the newest up-to-date research findings and to identify existing gaps in data provision, research and policy analy sis. The workshop brought together an international multidisciplinary group of well known experts including health professionals, molecular biologists, social scientists and ethicists as well as representatives of patient organizations and pol icy makers who presented and discussed the newest data and survey findings on selected ethical and social issues in the provision of new genetic tests. The main scientific contributors to this meeting have been awarded grants from ELSI, ESLA, BIOMED 1 and BIOMED 2 programs as well as national grants.
| Author | : National Research Council |
| Publisher | : National Academies Press |
| Total Pages | : 101 |
| Release | : 1998-01-19 |
| Genre | : Science |
| ISBN | : 0309184746 |
This book assesses the scientific value and merit of research on human genetic differencesâ€"including a collection of DNA samples that represents the whole of human genetic diversityâ€"and the ethical, organizational, and policy issues surrounding such research. Evaluating Human Genetic Diversity discusses the potential uses of such collection, such as providing insight into human evolution and origins and serving as a springboard for important medical research. It also addresses issues of confidentiality and individual privacy for participants in genetic diversity research studies.
| Author | : Dorothy C. Wertz |
| Publisher | : Springer Science & Business Media |
| Total Pages | : 479 |
| Release | : 2012-12-06 |
| Genre | : Medical |
| ISBN | : 9400709811 |
Dorothy Wertz and John Fletcher pioneered the first international study of ethical and social issues in genetics in 18 nations. This book reports and discusses their second and more representative study in 36 nations. The survey focused on actual situations that occur in the practice of medical genetics, presented as case vignettes that can also be used in teaching and policy discussion. Among the issues discussed are privacy, prenatal diagnosis, patient autonomy, directiveness in counseling, sex selection, forensic DNA banking, "genetic discrimination," and "eugenics". This is Dorothy Wertz's final book, as she died in April, 2003. It is a one of a kind cross-cultural study of complex ethical issues in the uses of genetic information. No one else has attempted to look at the international aspects of medical genetics on such a broad scale. The results provide a resource for discussion both within and among nations. Much bioethical and policy discussion now occurs in an information vacuum. The survey showed that what people would do, and their reasons for doing it, differed considerably from what ethicists think they "should" do. Many will be surprised at the results, especially in nations where bioethical discussion is just beginning. Genetics and Ethics in Global Perspective is of interest to medical geneticists, genetic counselors, social scientists and anthropologists who study cross-cultural issues, bioethicists and bioethics centers and health policy makers.
| Author | : Shakeel Abid |
| Publisher | : GRIN Verlag |
| Total Pages | : 10 |
| Release | : 2024-06-28 |
| Genre | : Medical |
| ISBN | : 3389041567 |
Scientific Essay from the year 2024 in the subject Medicine - Human Genetics, , language: English, abstract: Challenging ethical issues are raised by new advances and emerging technologies in genetic research. These issues incorporate genetic uniqueness, privacy and discrimination, customized medicine, intellectual property and genetic testing. Investigating these complex issues emphasizes the need to modify ethical guidelines and direct ethics committees about the benefits and ethical apprehension of contemporary genetic research. This review gives an outlook of some major aspects of ethical concerns in human genetics.
| Author | : Dorothy C. Wertz |
| Publisher | : Springer Science & Business Media |
| Total Pages | : 564 |
| Release | : 2012-12-06 |
| Genre | : Medical |
| ISBN | : 3642736564 |
Based in part on a survey of ethical decision-marking among 682 medical geneticists worldwide, this book includes a chapter authored by a geneticistand an ethicist in 19 nations, describing genetic services, counselling, screening, prenatal diagnosis, and major ethical problems and social controversies faced by geneticists. The concluding chapter describes ethical and policy issues that exist worldwide, and offerssome possible resolutions.
