The postgenomic condition: an introduction -- The information of life or the life of information? -- Inclusion: can genomics be antiracist? -- Who represents the human genome? What is the human genome? -- Genomics for the people or the rise of the machines? -- Genomics for the 98 percent? -- The genomic open 2.0: the public v. the public -- Life on Third: knowledge and justice after the genome -- Epilogue
Two leading authors on medical ethics, science policy, and civil liberties take a hard look at how the United States has balanced the use of DNA technology, particularly the use of DNA databanks in criminal justice, with the privacy rights of its citizenry. The authors explore many controversial topics, including the legal precedent for taking DNA from juveniles, the search for possible family members of suspects in DNA databases, the launch of "DNA dragnets" among local populations, and the warrantless acquisition by police of so-called abandoned DNA in the search for suspects. Most intriguing, they explode the myth that DNA profiling is infallible, which has profound implications for criminal justice.
This book, written by four internationally renowned bioethicists and first published in 2000, was the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. The book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science.
"A good companion for those with a science background interested in learning more about human genetics." —Booklist Thanks to the popularity of personal genetic testing services, it's now easier than ever to get information about our own unique DNA—but who does this information really benefit? And, as genome editing and gene therapy transform the healthcare landscape, what do we gain—and what might we give up in return? Inside each of your cells is the nucleus, a small structure that contains all of the genetic information encoded by the DNA inside, your genome. Not long ago, the first human genome was sequenced at a cost of nearly $3 billion; now, this same test can be done for about $1,000. This new accessibility of genome sequence information creates huge potential for advances in how we understand and treat disease, among other things. It also raises significant concerns regarding ethics and personal privacy. In Mapping Humanity: How Modern Genetics Is Changing Criminal Justice, Personalized Medicine, and Our Identities, cellular biology expert Joshua Z. Rappoport provides a detailed look at how the explosion in genetic information as a result of cutting-edge technologies is changing our lives and our world. Inside, discover: • An in-depth look at how your personal genome creates the unique individual that you are • How doctors are using DNA sequencing to identify the underlying genetic causes of disease • Why the field of gene therapy offers amazing potential for medical breakthroughs—and why it's taking so long • The fantastic potential—and troubling concerns—surrounding genome editing • The real impact—and validity—of popular personal genetic testing products, such as 23andMe • Details of how molecular biology and DNA are changing the criminal justice system • Facts you should know about Genetically Modified Organisms (GMOs) Throughout, in compelling, accessible prose, Rappoport explores the societal, ethical, and economic impacts of this new era. Offering a framework for balancing the potential risks and benefits of genetic information technologies and genetic engineering, Mapping Humanity is an indispensable guide to navigating the possibilities and perils of our gene-centric future.
Presents the first comprehensive study of Indigenous perspectives on genetic resources, traditional knowledge, and access and benefit sharing in Canada. This book is also available as Open Access.
The Human Genome Project is an expensive, ambitious, and controversial attempt to locate and map every one of the approximately 100,000 genes in the human body. If it works, and we are able, for instance, to identify markers for genetic diseases long before they develop, who will have the right to obtain such information? What will be the consequences for health care, health insurance, employability, and research priorities? And, more broadly, how will attitudes toward human differences be affected, morally and socially, by the setting of a genetic “standard”? The compatibility of individual rights and genetic fairness is challenged by the technological possibilities of the future, making it difficult to create an agenda for a “just genetics.” Beginning with an account of the utopian dreams and authoritarian tendencies of historical eugenics movements, this book’s nine essays probe the potential social uses and abuses of detailed genetic information. Lucid and wide-ranging, these contributions will interest bioethicists, legal scholars, and policy makers. Essays: “The Genome Project and the Meaning of Difference,” Timothy F. Murphy “Eugenics and the Human Genome Project: Is the Past Prologue?,” Daniel J. Kevles “Handle with Care: Race, Class, and Genetics,” Arthur L. Caplan “Public Choices and Private Choices: Legal Regulation of Genetic Testing,” Lori B. Andrews “Rules for Gene Banks: Protecting Privacy in the Genetics Age,” George J. Annas “Use of Genetic Information by Private Insurers,” Robert J. Pokorski “The Genome Project, Individual Differences, and Just Health Care,” Norman Daniels “Just Genetics: A Problem Agenda,” Leonard M. Fleck “Justice and the Limitations of Genetic Knowledge,” Marc A. Lappé This title is part of UC Press's Voices Revived program, which commemorates University of California Press’s mission to seek out and cultivate the brightest minds and give them voice, reach, and impact. Drawing on a backlist dating to 1893, Voices Revived makes high-quality, peer-reviewed scholarship accessible once again using print-on-demand technology. This title was originally published in 1994.
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.
This edited volume presents the current state of the art of genetics education and the challenges it holds for teaching as well as for learning. It addresses topics such as how genetics should be taught in order to provide students with a wide and connected view of the field. It gives in-depth aspects that should be considered for teaching genetics and the effect on the student’s understanding. This book provides novel ideas for biology teachers, curriculum developers and researchers on how to confront the presented challenges in a way that may enable them to advance genetics education in the 21st century. It reviews the complexity of teaching and learning genetics, largely overlooked by biology textbooks and classroom instruction. It composes a crucial component of scientific literacy.
This is the revised edition of the casebook, Genetics: Ethics, Law, and Policy, which has been used successfully in law schools in both the seminar and course context. It is authored by three of the nation's leading experts on genetic ethics, law and policy. Students enjoy the course because of the topicality of the subjects, many of which they hear about in the news (gene discoveries, embryo stem cell research). Faculty members enjoy teaching from the book because of the excellent teaching manual and because they can link it to other topics ? the casebook covers issues in health law, employment law, insurance law, criminal law, family law, and other fields. The casebook is supplemented regularly on the TWEN website, so that it is always current. A background in genetics is not required for either students or teachers. The casebook and teachers? manual are written so that the casebook can be used for undergraduate courses or courses for the health professions, for public health, or for public policy.
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.
