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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.
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
In 2000, with the success of the Human Genome Project, scientists declared the death of race in biology and medicine. But within five years, many of these same scientists had reversed course and embarked upon a new hunt for the biological meaning of race. Drawing on personal interviews and life stories, Race Decoded takes us into the world of elite genome scientists—including Francis Collins, director of the NIH; Craig Venter, the first person to create a synthetic genome; and Spencer Wells, National Geographic Society explorer-in-residence, among others—to show how and why they are formulating new ways of thinking about race. In this original exploration, Catherine Bliss reveals a paradigm shift, both at the level of science and society, from colorblindness to racial consciousness. Scientists have been fighting older understandings of race in biology while simultaneously promoting a new grand-scale program of minority inclusion. In selecting research topics or considering research design, scientists routinely draw upon personal experience of race to push the public to think about race as a biosocial entity, and even those of the most privileged racial and social backgrounds incorporate identity politics in the scientific process. Though individual scientists may view their positions differently—whether as a black civil rights activist or a white bench scientist—all stakeholders in the scientific debates are drawing on memories of racial discrimination to fashion a science-based activism to fight for social 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.
Our genetic markers have come to be regarded as portals to the past. Analysis of these markers is increasingly used to tell the story of human migration; to investigate and judge issues of social membership and kinship; to rewrite history and collective memory; to right past wrongs and to arbitrate legal claims and human rights controversies; and to open new thinking about health and well-being. At the same time, in many societies genetic evidence is being called upon to perform a kind of racially charged cultural work: to repair the racial past and to transform scholarly and popular opinion about the “nature” of identity in the present. Genetics and the Unsettled Past considers the alignment of genetic science with commercial genealogy, with legal and forensic developments, and with pharmaceutical innovation to examine how these trends lend renewed authority to biological understandings of race and history. This unique collection brings together scholars from a wide range of disciplines—biology, history, cultural studies, law, medicine, anthropology, ethnic studies, sociology—to explore the emerging and often contested connections among race, DNA, and history. Written for a general audience, the book’s essays touch upon a variety of topics, including the rise and implications of DNA in genealogy, law, and other fields; the cultural and political uses and misuses of genetic information; the way in which DNA testing is reshaping understandings of group identity for French Canadians, Native Americans, South Africans, and many others within and across cultural and national boundaries; and the sweeping implications of genetics for society today.
Heritable human genome editing - making changes to the genetic material of eggs, sperm, or any cells that lead to their development, including the cells of early embryos, and establishing a pregnancy - raises not only scientific and medical considerations but also a host of ethical, moral, and societal issues. Human embryos whose genomes have been edited should not be used to create a pregnancy until it is established that precise genomic changes can be made reliably and without introducing undesired changes - criteria that have not yet been met, says Heritable Human Genome Editing. From an international commission of the U.S. National Academy of Medicine, U.S. National Academy of Sciences, and the U.K.'s Royal Society, the report considers potential benefits, harms, and uncertainties associated with genome editing technologies and defines a translational pathway from rigorous preclinical research to initial clinical uses, should a country decide to permit such uses. The report specifies stringent preclinical and clinical requirements for establishing safety and efficacy, and for undertaking long-term monitoring of outcomes. Extensive national and international dialogue is needed before any country decides whether to permit clinical use of this technology, according to the report, which identifies essential elements of national and international scientific governance and oversight.
Women make up the vast majority of activists and organizers of grassroots movements fighting against environmental ills that threaten poor and people of color communities. [This] collection of essays ... pays tribute to the ... contributions women have made in these endeavors. The writers offer varied examples of environmental justice issues such as children's environmental-health campaigns, cancer research, AIDS/HIV activism, the Environmental Genome Project, and popular culture, among many others. Each one focuses on gender and sexuality as crucial factors in women's or gay men's activism and applies environmental justice principles to related struggles for sexual justice. Drawing on a wide variety of disciplinary perspectives, the contributors offer multiple vantage points on gender, sexuality, and activism.-Back cover.
There is growing enthusiasm in the scientific community about the prospect of mapping and sequencing the human genome, a monumental project that will have far-reaching consequences for medicine, biology, technology, and other fields. But how will such an effort be organized and funded? How will we develop the new technologies that are needed? What new legal, social, and ethical questions will be raised? Mapping and Sequencing the Human Genome is a blueprint for this proposed project. The authors offer a highly readable explanation of the technical aspects of genetic mapping and sequencing, and they recommend specific interim and long-range research goals, organizational strategies, and funding levels. They also outline some of the legal and social questions that might arise and urge their early consideration by policymakers.
In the summer of 1991, population geneticists and evolutionary biologists proposed to archive human genetic diversity by collecting the genomes of "isolated indigenous populations." Their initiative, which became known as the Human Genome Diversity Project, generated early enthusiasm from those who believed it would enable huge advances in our understanding of human evolution. However, vocal criticism soon emerged. Physical anthropologists accused Project organizers of reimporting racist categories into science. Indigenous-rights leaders saw a "Vampire Project" that sought the blood of indigenous people but not their well-being. More than a decade later, the effort is barely off the ground. How did an initiative whose leaders included some of biology's most respected, socially conscious scientists become so stigmatized? How did these model citizen-scientists come to be viewed as potential racists, even vampires? This book argues that the long abeyance of the Diversity Project points to larger, fundamental questions about how to understand knowledge, democracy, and racism in an age when expert claims about genomes increasingly shape the possibilities for being human. Jenny Reardon demonstrates that far from being innocent tools for fighting racism, scientific ideas and practices embed consequential social and political decisions about who can define race, racism, and democracy, and for what ends. She calls for the adoption of novel conceptual tools that do not oppose science and power, truth and racist ideologies, but rather draw into focus their mutual constitution.