Justice and the Human Genome Project

Justice and the Human Genome Project PDF

Author: Timothy F. Murphy

Publisher: Univ of California Press

Published: 2024-07-26

Total Pages: 195

ISBN-13: 0520377931

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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

The Postgenomic Condition PDF

Author: Jenny Reardon

Publisher: University of Chicago Press

Published: 2017-12-29

Total Pages: 320

ISBN-13: 022651045X

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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

Achieving Justice in Genomic Translation

Achieving Justice in Genomic Translation PDF

Author: Wylie Burke MD, PhD

Publisher: Oxford University Press

Published: 2011-09-15

Total Pages: 223

ISBN-13: 0199909741

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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.

Justice and the Human Genome Project

Justice and the Human Genome Project PDF

Author: Timothy F. Murphy

Publisher: Univ of California Press

Published: 2024-07-26

Total Pages: 194

ISBN-13: 0520414659

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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.

Race Decoded

Race Decoded PDF

Author: Catherine Bliss

Publisher: Stanford University Press

Published: 2012-05-23

Total Pages: 281

ISBN-13: 0804782059

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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.

From Chance to Choice

From Chance to Choice PDF

Author: Allen Buchanan

Publisher: Cambridge University Press

Published: 2001-11-12

Total Pages: 414

ISBN-13: 1316583937

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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.

Justice in Genetics

Justice in Genetics PDF

Author: Louise Bernier

Publisher: Edward Elgar Publishing

Published: 2010-01-01

Total Pages: 271

ISBN-13: 1849806446

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Providing new insight into the ideas surrounding one of the longest running and hotly debated governmental issues – the global access to healthcare challenge – Louise Bernier develops an original theoretical framework that builds upon cosmopolitan liberal theory. This groundbreaking analysis offers a useful justification for engaging in a global and more equitable redistribution of health-related resources. The author examines if and how this theory of distribution translates into positive law and analyzes the barriers to legal compliance and global distributive justice in health. Other topics analyzed in this book include: intellectual property and international human rights, and the extent to which the philosophy and structure of each of these normative systems furthers the goal of distributing benefits equitably and globally; the use of strong and original normative landmarks to justify relying on a cosmopolitan approach to global justice based on health needs; and the social, political, economic and legal obstacles and opportunities resulting from the commercialization of the quickly evolving field of genetics. Ultimately, the book exemplifies the groundwork needed to initiate policy discussions and to eventually undertake concrete changes to achieve international redistribution of the resources emerging from genetics. As such, it will be of great value to students and scholars interested in health, law, human rights and intellectual property.

Genetics

Genetics PDF

Author: Ted Peters

Publisher:

Published: 1998

Total Pages: 280

ISBN-13:

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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.

New Perspectives on Environmental Justice

New Perspectives on Environmental Justice PDF

Author: Rachel Stein

Publisher: Rutgers University Press

Published: 2004

Total Pages: 198

ISBN-13: 0813534275

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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.