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Ethical Issues of Human Genetic Databases by Bernice Elger Pdf
Following the boom in population databases in recent years there has been sustained and intense international debate about political processes and legal and ethical issues surrounding the protection and use of genetic data. As a result, several national and international organizations and committees have published widely differing guidelines and statements concerning genetic databases and biobanks. Ethical Issues of Human Genetic Databases compares the new area of biobanking with the tradition of ethically accepted classical research and highlights the distinctive features of existing databases and guidelines. The volume identifies areas of consensus and controversy while investigating the challenges posed to classical health research ethics by the existence of genetic databases, analyzing the reasons for such varying guidelines. The book will be essential to academics, biobankers, policy-makers and researchers in the field of medical ethics.
Genetic Databases by Oonagh Corrigan,Richard Tutton Pdf
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.
Populations and Genetics by Bartha Maria Knoppers Pdf
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.
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.
Ethical Issues in Governing Biobanks by Nikola Biller-Andorno,Alexander M. Capron Pdf
Population genomics research drawing on genetic databases has expanded rapidly, with some of this information being combined in 'biobanks'. Managing this information in an appropriate way is a highly complex ethical issue in the health policy arena. This book combines theoretical and empirical research to analyze the areas of conflict and consensus in the regulatory and ethical frameworks that have been developed to govern biobanks. Ethicists from the Department of Ethics, Trade, Human Rights and Health Law (ETH) of the World Health Organization, the Institute of Biomedical Ethics of Geneva University and the Institute of Biomedical Ethics of the University of Zurich, with the support of the Geneva International Academic Network (GIAN), examine the conditions under which genetic databases can be established, kept, and made use of in an ethically acceptable way. In addition to a comprehensive review of the scientific literature and a comparative analysis of existing normative frameworks, they present the results of in-depth interviews with experts around the world concerning the most unresolved and controversial issues. The results of that study, combined with their normative analysis, leads to recommendations for a better international framework.
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.
Society and Genetic Information by Judit S ndor Pdf
The genetic era has given rise to significant legal dilemmas: who may own genetic data, when can a genetic test be performed on children, how can genetic-based discrimination be avoided, or to what extent and in what ways can genetic data be protected? The book addresses the social, ethical, and legal implications of collecting, storing, analyzing, and commercializing genetic information. Prominent biologists, medical doctors, lawyers, anthropologists, philosophers, sociologists, and theologians from different countries provide their views on the complex biological and social impacts of the imminent proliferation of genetic information. The authors explore the various uses and applications of genetic information, and discuss the current dilemmas of making laws in the field of genetics. Different models of national genome projects and biobanks, as well as the related international legal documents and national laws are also discussed. Various genome projects and biobanks are analyzed in detail.
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 : 41,5 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.
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 : 51,9 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.
The Human Genome Project in College Curriculum by Aine Donovan,Ronald Michael Green Pdf
Begun formally in 1990, the U.S. Human Genome Project's (HGP) goals were to identify all the 20,000 to 25,000 genes in human DNA, determine the sequences of the three billion chemical base pairs that make up human DNA, store this information in databases, improve tools for data analysis, and transfer related technologies to the private sector. It was the first large scientific undertaking to address potential issues that arose from project data, and opened up vast possibilities for the use of genetic data and the alteration of our genetic makeup. This volume is the first to address the diverse range of ethical issues arising from the HGP, and enables professors to bring this critically important topic to life in the classroom. ';
Debating Human Genetics examines contemporary public debate on emerging developments in medical genetics, including cloning, gene therapy, gene patenting, biobanks, genetic testing and screening, and pharmacogenomics.
Handbook of Statistical Genomics by David J. Balding,Ida Moltke,John Marioni Pdf
A timely update of a highly popular handbook on statistical genomics This new, two-volume edition of a classic text provides a thorough introduction to statistical genomics, a vital resource for advanced graduate students, early-career researchers and new entrants to the field. It introduces new and updated information on developments that have occurred since the 3rd edition. Widely regarded as the reference work in the field, it features new chapters focusing on statistical aspects of data generated by new sequencing technologies, including sequence-based functional assays. It expands on previous coverage of the many processes between genotype and phenotype, including gene expression and epigenetics, as well as metabolomics. It also examines population genetics and evolutionary models and inference, with new chapters on the multi-species coalescent, admixture and ancient DNA, as well as genetic association studies including causal analyses and variant interpretation. The Handbook of Statistical Genomics focuses on explaining the main ideas, analysis methods and algorithms, citing key recent and historic literature for further details and references. It also includes a glossary of terms, acronyms and abbreviations, and features extensive cross-referencing between chapters, tying the different areas together. With heavy use of up-to-date examples and references to web-based resources, this continues to be a must-have reference in a vital area of research. Provides much-needed, timely coverage of new developments in this expanding area of study Numerous, brand new chapters, for example covering bacterial genomics, microbiome and metagenomics Detailed coverage of application areas, with chapters on plant breeding, conservation and forensic genetics Extensive coverage of human genetic epidemiology, including ethical aspects Edited by one of the leading experts in the field along with rising stars as his co-editors Chapter authors are world-renowned experts in the field, and newly emerging leaders. The Handbook of Statistical Genomics is an excellent introductory text for advanced graduate students and early-career researchers involved in statistical genetics.
