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The Governance of Genetic Information by Heather Widdows,Caroline Mullen Pdf
This volume maps the areas of ethical concern in the debate regarding the governance of genetic information, and suggests alternative ethical frameworks and models of regulation in order to inform its restructuring. Genetic governance is at the heart of medical and scientific developments, and is connected to global exploitation, issues of commodification, commercialisation and ownership, the concepts of property and intellectual property and concerns about individual and communal identity. Thus the decisions that are made in the next few years about appropriate models of genetic governance will have knock-on effects for other areas of governance. In short the final answer to 'Who Decides?' in the context of genetic governance will fundamentally shape the ethical constructs of individuals and their networks and relationships in the public sphere.
Assessing Genetic Risks by Institute of Medicine,Committee on Assessing Genetic Risks Pdf
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.
Genetic Governance by Robin Bunton,Alan Petersen Pdf
Ethical and practical issues around genetic research are of major international concern, both in academia and in the public domain. Questions concerning what interventions are possible and appropriate with the increasing amount of genetic information available, challenge our understandings of ourselves, our health and wellbeing, and the role of medical ethics, public health, surveillance and risk. However there has been little reflection on the socio-political effects of this new genetic knowledge and the changes in practice that are currently impacting on our lives. Containing contributions from key international researchers, this book examines the broader issues of genetic debates and looks at how prediction and risk assessment is being changed in the arenas of health, medicine and reproduction, bringing new insight on the dangers of surveillance, regulation and increased inequality. Developed out of the Taylor and Francis journal Critical Public Health, the book considers the implications of developments in genetics for contemporary liberal governance, as well as for the future of healthcare and public health.
National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Board on Biology
Author : National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Board on Biology Publisher : National Academies Press Page : 59 pages File Size : 42,8 Mb Release : 1998-12-10 Category : Medical ISBN : 9780309063289
Privacy Issues in Biomedical and Clinical Research by National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Board on Biology Pdf
After discussions with the National Cancer Institute and the Department of Energy the Board on Biology of the National Research Council agreed to run a workshop under the auspices of its Forum on Biotechnology entitled "Privacy Issues in Biomedical and Clinical Research" on November 1, 1997. The organizers want to stress the forum was not intended to cover the full gauntlet of issues concerning Genomics and the Privacy of Medical Records. The emphasis of this forum was to look at pending legislation in Congress (Fall, 1997) and consider, if enacted as written, how this would affect genetic research. The broad language of this legislation written to protect the individual could inadvertently restrict research intended to help these same individuals. Scientific progress requires the sharing of information for the validation of results and the dissemination of gained knowledge to be effective. Other issues which were touched upon in this forum but not fully explored include; the trust of individuals involved in genetic studies in the manner their genetic information could be used, the practice of the generalized "linking" of particular ethnic groups with specific genetic traits, and the potential for positive and negative impact on the quality of life by having knowledge of one's genetic potential. These and other issues which have come upon us in the age of genomics require separate, focused efforts to explore their potential effect on society.
National Academies of Sciences, Engineering, and Medicine,National Academy of Medicine,National Academy of Sciences,Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations
Author : National Academies of Sciences, Engineering, and Medicine,National Academy of Medicine,National Academy of Sciences,Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations Publisher : National Academies Press Page : 329 pages File Size : 50,8 Mb Release : 2017-08-13 Category : Medical ISBN : 9780309452885
Human Genome Editing by National Academies of Sciences, Engineering, and Medicine,National Academy of Medicine,National Academy of Sciences,Committee on Human Gene Editing: Scientific, Medical, and Ethical Considerations Pdf
Genome editing is a powerful new tool for making precise alterations to an organism's genetic material. Recent scientific advances have made genome editing more efficient, precise, and flexible than ever before. These advances have spurred an explosion of interest from around the globe in the possible ways in which genome editing can improve human health. The speed at which these technologies are being developed and applied has led many policymakers and stakeholders to express concern about whether appropriate systems are in place to govern these technologies and how and when the public should be engaged in these decisions. Human Genome Editing considers important questions about the human application of genome editing including: balancing potential benefits with unintended risks, governing the use of genome editing, incorporating societal values into clinical applications and policy decisions, and respecting the inevitable differences across nations and cultures that will shape how and whether to use these new technologies. This report proposes criteria for heritable germline editing, provides conclusions on the crucial need for public education and engagement, and presents 7 general principles for the governance of human genome editing.
Genetic Testing and the Governance of Risk in the Contemporary Economy by Lara Khoury,Adelle Blackett,Lukas Vanhonnaeker Pdf
This book addresses emerging questions concerning who should bear responsibility for shouldering risk, as well as the viability of existing and experimental governance mechanisms in connection with new technologies. Scholars from 14 jurisdictions unite their efforts in this edited collection to provide a comparative analysis of how various legal systems are tackling the challenges produced by the legal aspects of genetic testing in insurance and employment. They cover the diverse set of norms that surround this issue, and share insights into relevant international, regional and national incursions into the field. By doing so, the authors offer a basis for comparative reflection, including on whether transnational standard setting might be useful or necessary for the legal aspects of genetic testing as they relate to the insurance and employment contexts. The respective texts cover a broad range of topics, including the prevalence of genetic testing in the contexts of insurance and employment, and policy factors that might affect this prevalence, such as the design of national health or social insurance systems, of private insurance schemes or the availability of low-cost direct-to-consumer genetic testing. Further, the field of genetics is gaining in importance at the international and regional levels. Relevant concepts – mainly genetic tests and genetic data/information – have been internationally defined, and these definitions have influenced definitions adopted nationally. International law also recognizes a “special status” for human genetic data. The authors therefore also consider these definitions and the recognition of the special status of human genetic data within regional and national legal orders. They investigate the range of norms that specifically address the use of genetic testing in employment and insurance, encompassing international sources – including human rights norms – that may be binding or non-binding, as well national statutory, regulatory and soft-law mechanisms. Accordingly, some of the texts examine general frameworks relevant to genetic testing in each country, including those that stem from general anti-discrimination rules and norms protecting rights to autonomy, self-determination, confidentiality and privacy. In closing, the authors provide an overview of the efficiency of their respective legal regimes’ approaches – specific and generalist – to genetic testing or disclosure of genetic information in the employment or insurance contexts, including the effect of lack of legal guidance. In this regard, some of the authors highlight the need for transnational action in the field and make recommendation for future legal developments.
Creation and Governance of Human Genetic Research Databases by OECD Pdf
Summarises proceedings of a conference looking at examples of human genetic research databases, how they are established, how they are managed and governed, how they might be commercialised, and what the policy considerations might be.
The Ethics and Governance of Human Genetic Databases by Matti Häyry,Ruth Chadwick,Vilhjálmur Árnason,Gardar Árnason Pdf
The Medical Biobank of Umeå in Sweden, deCODE's Health Sector Database in Iceland, the Estonian Genome Project and the UK Biobank contain health data and genetic data from large populations. Some include genealogical or lifestyle information. They are resources for research in human genetics and medicine, exploring interaction between genes, lifestyle, environmental factors and health and diseases. The collection, storage and use of this data raise ethical, legal and social issues. In this book, first published in 2007, bioethics scholars examine whether existing ethical frameworks and social policies reflect people's concerns, and how they may need to change in light of new scientific and technological developments. The ethical issues of social justice, genetic discrimination, informational privacy, trust in science and consent to participation in database research are analyzed, whilst an empirical survey, conducted in the four countries, demonstrates public views of privacy and related moral values in the context of human genetic databases.
National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Committee on Human Genome Diversity
Author : National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Committee on Human Genome Diversity Publisher : National Academies Press Page : 101 pages File Size : 48,8 Mb Release : 1998-01-19 Category : Science ISBN : 9780309184748
Evaluating Human Genetic Diversity by National Research Council,Division on Earth and Life Studies,Commission on Life Sciences,Committee on Human Genome Diversity Pdf
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.
The Handbook of Genetics & Society by Paul Atkinson,Peter Glasner,Margaret Lock Pdf
An authoritative Handbook which offers a discussion of the social, political, ethical and economic consequences and implications of the new bio-sciences. The Handbook takes an interdisciplinary approach providing a synoptic overview of contemporary international social science research on genetics, genomics and the new life sciences. It brings together leading scholars with expertise across a wide-ranging spectrum of research fields related to the production, use, commercialisation and regulation of genetics knowledge. The Handbook is structured into seven cross-cutting themes in contemporary social science research on genetics with introductions written by internationally renowned section editors who take an interdisciplinary approach to offer fresh insights on recent developments and issues in often controversial fields of study. The Handbook explores local and global issues and critically approaches a wide range of public and policy questions, providing an invaluable reference source to a wide variety of researchers, academics and policy makers.
National Research Council,Commission on Behavioral and Social Sciences and Education,Committee on Population
Author : National Research Council,Commission on Behavioral and Social Sciences and Education,Committee on Population Publisher : National Academies Press Page : 388 pages File Size : 46,9 Mb Release : 2001-01-19 Category : Social Science ISBN : 9780309171434
Cells and Surveys by National Research Council,Commission on Behavioral and Social Sciences and Education,Committee on Population Pdf
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 : Privacy Commissioner of Canada Publisher : Commissaire à la protection de la vie privée Page : 256 pages File Size : 52,6 Mb Release : 1992 Category : Civil rights ISBN : UIUC:30112001300224
Dépistage Génétique Et la Vie Privée by Privacy Commissioner of Canada Pdf
This report gives a simplified description of the scientific fundamentals of genetic testing and describes its present applications; establishes broad privacy principles to guide both the public and private sectors on testing matters; examines specifically how the Privacy Act regulates genetic testing by government institutions; and addresses the growing need to consider regulating private sector genetic testing. A summary of positions taken by other countries and international organizations on privacy and genetic testing is also included.
