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Author: Timothy A. Caulfield Publisher: Springer Science & Business Media ISBN: 146154713X Category : Science Languages : en Pages : 200
Book Description
The rapid advances made in genetic research and technology over the last few decades have led to a host of important discoveries that have allowed for the detection (and hopefully soon the treatment) of a number of genetic conditions and diseases. Not surprisingly, these advances have also raised numerous ethical concerns about how result ing technologies will be implemented, and the impact they will have on different com munities. One particular concern is the enormous costs involved in conducting genetic research and the fact that the private sector has become heavily involved; the desire to commercialize the results and technology derived from genetic research is considered problematic. In September 1998, the Second International Conference on DNA Sampling, titled "The Commercialization of Genetic Research: Ethical, Legal and Policy Issues," was held of the conference, and of this book, was to in Edmonton, Alberta, Canada. The goal facilitate an interdisciplinary discussion of the legal, ethical, and policy implications arising from the commercialization of genetic research. We solicited contributions for the book from authors in fields as diverse as ethics, law, medicine, health policy, and the social sciences. The papers included, while based on presentations given at the conference, have been substantially expanded and enhanced by the commentary received and discussions held at the conference.
Author: Timothy A. Caulfield Publisher: Springer Science & Business Media ISBN: 146154713X Category : Science Languages : en Pages : 200
Book Description
The rapid advances made in genetic research and technology over the last few decades have led to a host of important discoveries that have allowed for the detection (and hopefully soon the treatment) of a number of genetic conditions and diseases. Not surprisingly, these advances have also raised numerous ethical concerns about how result ing technologies will be implemented, and the impact they will have on different com munities. One particular concern is the enormous costs involved in conducting genetic research and the fact that the private sector has become heavily involved; the desire to commercialize the results and technology derived from genetic research is considered problematic. In September 1998, the Second International Conference on DNA Sampling, titled "The Commercialization of Genetic Research: Ethical, Legal and Policy Issues," was held of the conference, and of this book, was to in Edmonton, Alberta, Canada. The goal facilitate an interdisciplinary discussion of the legal, ethical, and policy implications arising from the commercialization of genetic research. We solicited contributions for the book from authors in fields as diverse as ethics, law, medicine, health policy, and the social sciences. The papers included, while based on presentations given at the conference, have been substantially expanded and enhanced by the commentary received and discussions held at the conference.
Author: National Research Council Publisher: National Academies Press ISBN: 0309184746 Category : Science Languages : en Pages : 101
Book Description
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: National Research Council Publisher: National Academies Press ISBN: 0309171431 Category : Social Science Languages : en Pages : 388
Book Description
What can social science, and demography in particular, reasonably expect to learn from biological information? There is increasing pressure for multipurpose household surveys to collect biological data along with the more familiar interviewer-respondent information. Given that recent technical developments have made it more feasible to collect biological information in non-clinical settings, those who fund, design, and analyze survey data need to think through the rationale and potential consequences. This is a concern that transcends national boundaries. Cells and Surveys addresses issues such as which biologic/genetic data should be collected in order to be most useful to a range of social scientists and whether amassing biological data has unintended side effects. The book also takes a look at the various ethical and legal concerns that such data collection entails.
Author: Institute of Medicine Publisher: National Academies Press ISBN: 0309047986 Category : Medical Languages : en Pages : 353
Book Description
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: National Academies of Sciences, Engineering, and Medicine Publisher: National Academies Press ISBN: 0309673038 Category : Medical Languages : en Pages : 113
Book Description
Consumer genomics, encompassing both direct-to-consumer applications (i.e., genetic testing that is accessed by a consumer directly from a commercial company apart from a health care provider) and consumer-driven genetic testing (i.e., genetic testing ordered by a health care provider in response to an informed patient request), has evolved considerably over the past decade, moving from more personal utility-focused applications outside of traditional health care to interfacing with clinical care in nontraditional ways. As consumer genomics has increasingly intersected with clinical applications, discussions have arisen around the need to demonstrate clinical and analytical validity and clinical utility due to the potential for misinterpretation by consumers. Clinical readiness and interest for this information have presented educational and training challenges for providers. At the same time, consumer genomics has emerged as a potentially innovative mechanism for thinking about health literacy and engaging participants in their health and health care. To explore the current landscape of consumer genomics and the implications for how genetic test information is used or may be used in research and clinical care, the Roundtable on Genomics and Precision Health of the National Academies of Sciences, Engineering, and Medicine hosted a public workshop on October 29, 2019, in Washington, DC. Discussions included such topics as the diversity of participant populations, the impact of consumer genomics on health literacy and engagement, knowledge gaps related to the use of consumer genomics in clinical care, and regulatory and health policy issues such as data privacy and security. A broad array of stakeholders took part in the workshop, including genomics and consumer genomics experts, epidemiologists, health disparities researchers, clinicians, users of consumer genomics research applications, representatives from patient advocacy groups, payers, bioethicists, regulators, and policy makers. This publication summarizes the presentations and discussion of the workshop.
Author: Bartha Maria Knoppers Publisher: BRILL ISBN: 9047402936 Category : Law Languages : en Pages : 668
Book Description
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: Samiran Nundy Publisher: Springer Nature ISBN: 9811652481 Category : Medical Languages : en Pages : 475
Book Description
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: National Academies of Sciences, Engineering, and Medicine Publisher: National Academies Press ISBN: 0309437385 Category : Science Languages : en Pages : 607
Book Description
Genetically engineered (GE) crops were first introduced commercially in the 1990s. After two decades of production, some groups and individuals remain critical of the technology based on their concerns about possible adverse effects on human health, the environment, and ethical considerations. At the same time, others are concerned that the technology is not reaching its potential to improve human health and the environment because of stringent regulations and reduced public funding to develop products offering more benefits to society. While the debate about these and other questions related to the genetic engineering techniques of the first 20 years goes on, emerging genetic-engineering technologies are adding new complexities to the conversation. Genetically Engineered Crops builds on previous related Academies reports published between 1987 and 2010 by undertaking a retrospective examination of the purported positive and adverse effects of GE crops and to anticipate what emerging genetic-engineering technologies hold for the future. This report indicates where there are uncertainties about the economic, agronomic, health, safety, or other impacts of GE crops and food, and makes recommendations to fill gaps in safety assessments, increase regulatory clarity, and improve innovations in and access to GE technology.
Author: National Research Council Publisher: National Academies Press ISBN: 0309164885 Category : Science Languages : en Pages : 188
Book Description
The patenting and licensing of human genetic material and proteins represents an extension of intellectual property (IP) rights to naturally occurring biological material and scientific information, much of it well upstream of drugs and other disease therapies. This report concludes that IP restrictions rarely impose significant burdens on biomedical research, but there are reasons to be apprehensive about their future impact on scientific advances in this area. The report recommends 13 actions that policy-makers, courts, universities, and health and patent officials should take to prevent the increasingly complex web of IP protections from getting in the way of potential breakthroughs in genomic and proteomic research. It endorses the National Institutes of Health guidelines for technology licensing, data sharing, and research material exchanges and says that oversight of compliance should be strengthened. It recommends enactment of a statutory exception from infringement liability for research on a patented invention and raising the bar somewhat to qualify for a patent on upstream research discoveries in biotechnology. With respect to genetic diagnostic tests to detect patient mutations associated with certain diseases, the report urges patent holders to allow others to perform the tests for purposes of verifying the results.
Author: National Research Council Publisher: National Academies Press ISBN: 0309131863 Category : Technology & Engineering Languages : en Pages : 476
Book Description
This anchor volume to the series Managing Global Genetic Resources examines the structure that underlies efforts to preserve genetic material, including the worldwide network of genetic collections; the role of biotechnology; and a host of issues that surround management and use. Among the topics explored are in situ versus ex situ conservation, management of very large collections of genetic material, problems of quarantine, the controversy over ownership or copyright of genetic material, and more.
Author: Timothy A. Caulfield
Author: Timothy A. Caulfield
Author: National Research Council
Author: National Research Council
Author: Institute of Medicine
Author: National Academies of Sciences, Engineering, and Medicine
Author: Bartha Maria Knoppers
Author: Samiran Nundy
Author: National Academies of Sciences, Engineering, and Medicine
Author: National Research Council
Author: National Research Council