Justice And The Human Genome Project

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

This book explores implicit choices made by researchers, policy makers, and funders regarding who benefits from society's investment in health research. The authors focus specifically on genetic research and examine whether such research tends to reduce or exacerbate existing health disparities. Using case examples to illustrate the issues, the authors trace the path of genetics research from discovery, through development and delivery, to health outcomes. Topics include breast cancer screening and treatment, autism research, pharmacogenetics, prenatal testing, newborn screening, and youth suicide prevention. Each chapter emphasizes the societal context of genetic research and illustrates how science might change if attention were paid to the needs of marginalized populations. Written by experts in genetics, health, and philosophy, this book argues that the scientific enterprise has a responsibility to respond to community needs to assure that research innovations achieve much needed health impacts.

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.

Can theological ethics provide direction in an arena that is dominated by the scientific? This collection of fresh, timely statements by leading ethicists, theologians, and legal experts explore the social and religious implications of this big-science research.

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.

Smith has packed an incredible amount of information into this relatively short and clearly written book. His erudition is unquestionable, and his knowledge of current trends in medical technology and the ethical issues surrounding them is obvious on every page. P. Jenkins, Choice George P. Smith is one of the world s leading experts on the legal and ethical issues raised by modern medicine. His book is a wide-ranging and deeply informed and considered analysis of those issues, with particular emphasis on the inequality with which the benefits of modern medicine are bestowed on the sick. Knowledgeable as well about the technical aspects of the biomedical revolution, Smith writes with insight and authority, and offers a perspective that will influence the policy debates. Richard A. Posner, United States Court of Appeals for the Seventh Circuit and University of Chicago Law School, US While much has been written about the various issues addressed in this book genetics, cloning, informed consent, organ donation Smith s book moves beyond traditional legal analysis, tying these issues together by examining them through the lens of distributive justice. He thus provides the reader with a unique and valuable perspective on this important area. Distributive Justice and the New Medicine will be of interest to all those interested in health law and bioethics and in particular for those interested in distributive justice. Belinda Bennett, Journal of Law, Social Justice and Global Development Professor George P. Smith s Distributive Justice and the New Medicine is a major new work by one of the world s leading medical lawyers. This book brings important new insights into the complex area of rationing health care resources and should be read by anyone interested in seeking to create a just society. Jonathan Herring, Exeter College, University of Oxford, UK Is the advancement of scientific knowledge and the development of biomedical technologies known as the New Medicine desirable? George P. Smith asks this fundamental question while also confronting the distribution of these scarce medical resources. Law, economics, medical science, philosophy and ethics all coalesce in this discussion of how to structure normative standards of conduct that will improve the quality of human life. The author begins by examining various economic constructs as aids for achieving a fair and equitable delivery of health care services. He then assesses their level of practical application and evaluates the costs and benefits to society of pursuing the development and use of the New Medicine . The book ends with a case study of organ and tissue transplantation that illustrates the implementation of distributive justice. The author concludes that as long as clinical medicine maintains its focus on healing and alleviating suffering among patients, a point of equilibrium will be reached that advances the common good. This timely and compelling exploration will be a must-read for scholars, researchers, policymakers and all those interested in advances in medical technology and the issues surrounding access to health care.