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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.
The "Genetics, Man, and Society" symposium was a collaborative effort of the Task Force on Genetics and Reproduction at Yale University and the Youth Council of the American Association for the Advancement of Science (A. A. A. S. ). The Task Force on Genetics and Reproduction at Yale is a voluntary, inter-professional organization engaged in examination of ethical and social implications of medical and basic genetics. It is similar in purpose to the Hastings Institute of Society, Ethics, and Life Sciences and the Kennedy Center for the Study of Bioethics at Georgetown. The Youth Council of A. A. A. S. was a committee of the A. A. A. S. concerned with problems of young persons. The Youth Council had significant impact on the A. A. A. S. through the constitutional reform and a number of innovative programs including the Congressional Fellows and Regional Centers Program, and the Committees on Minorities and Women. The symposium was initially conceived by William Drayton and Richard A. Tropp and was arranged by us. The Task Force took primary responsibility for format and for selecting and inviting speakers. The Youth Council made the arrangements, raised the necessary funds and represented the organizers for post-symposium use of the materials including printed and taped publications. This volume contains the edited proceedings of the symposium plus the editors' perspective on it.
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.
A Companion to Genethics is the first substantial study of the multifaceted dimensions of the genetic revolution and its philosophical, ethical, social and political significance. Brings together the best and most influential writing about the ethics of genetics; Includes 33 newly-commissioned essays, all written by prominent figures in the field; Shows how there is scarcely a part of our lives left unaffected by the impact of the new genetics.
Today, scores of companies, primarily in the United States and Europe, are offering whole genome scanning services directly to the public. The proliferation of these companies and the services they offer demonstrate a public appetite for this information and where the future of genetics may be headed; they also demonstrate the need for serious discussion about the regulatory environment, patient privacy, and other policy implications of direct-to-consumer (DTC) genetic testing. Rapid advances in genetic research already have begun to transform clinical practice and our understanding of disease progression. Existing research has revealed a genetic basis or component for numerous diseases, including Parkinson's disease, Alzheimer's disease, diabetes, heart disease, and several forms of cancer. The availability of the human genome sequence and the HapMap, plummeting costs of high-throughput screening, and increasingly sophisticated computational analyses have led to an explosion of discoveries of linkages between patterns of genetic variation and disease susceptibility. While this research is by no means a straight path toward better public health, improved knowledge of the genetic linkages has the potential to change fundamentally the way health professionals and public health practitioners approach the prevention and treatment of disease. Realizing this potential will require greater sophistication in the interpretation of genetic tests, new training for physicians and other diagnosticians, and new approaches to communicating findings to the public. As this rapidly growing field matures, all of these questions require attention from a variety of perspectives. To discuss some of the foregoing issues, several units of the National Academies held a workshop on August 31 and September 1, 2009, to bring together a still-developing community of professionals from a variety of relevant disciplines, to educate the public and policy-makers about this emerging field, and to identify issues for future study. The meeting featured several invited presentations and discussions on the many technical, legal, policy, and ethical questions that such DTC testing raises, including: (1) overview of the current state of knowledge and the future research trajectory; (2) shared genes and emerging issues in privacy; (3) the regulatory framework; and (4) education of the public and the medical community.
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.
A provocative and timely case for how the science of genetics can help create a more just and equal society In recent years, scientists like Kathryn Paige Harden have shown that DNA makes us different, in our personalities and in our health—and in ways that matter for educational and economic success in our current society. In The Genetic Lottery, Harden introduces readers to the latest genetic science, dismantling dangerous ideas about racial superiority and challenging us to grapple with what equality really means in a world where people are born different. Weaving together personal stories with scientific evidence, Harden shows why our refusal to recognize the power of DNA perpetuates the myth of meritocracy, and argues that we must acknowledge the role of genetic luck if we are ever to create a fair society. Reclaiming genetic science from the legacy of eugenics, this groundbreaking book offers a bold new vision of society where everyone thrives, regardless of how one fares in the genetic lottery.
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.
Prenatal diagnosis, especially noninvasive prenatal testing (NIPT), has changed the experience of pregnancy, prenatal care and responsibilities in Israel and Germany in different ways. These differences reflect the countries' historical legacies, medico-legal policies, normative and cultural identities. Building on this observation, the contributors of this book present conversations between leading scholars from Israel and Germany based on an empirical bioethical perspective, analyses about the reshaping of 'life' by biomedicine, and philosophical reflections on socio-cultural claims and epistemic horizons of responsibilities. Practices and discussions of reproductive medicine transform the concepts of responsibility and irresponsibility.
Research on gene drive systems is rapidly advancing. Many proposed applications of gene drive research aim to solve environmental and public health challenges, including the reduction of poverty and the burden of vector-borne diseases, such as malaria and dengue, which disproportionately impact low and middle income countries. However, due to their intrinsic qualities of rapid spread and irreversibility, gene drive systems raise many questions with respect to their safety relative to public and environmental health. Because gene drive systems are designed to alter the environments we share in ways that will be hard to anticipate and impossible to completely roll back, questions about the ethics surrounding use of this research are complex and will require very careful exploration. Gene Drives on the Horizon outlines the state of knowledge relative to the science, ethics, public engagement, and risk assessment as they pertain to research directions of gene drive systems and governance of the research process. This report offers principles for responsible practices of gene drive research and related applications for use by investigators, their institutions, the research funders, and regulators.