The Human Genome Project and Minority Communities

The Human Genome Project and Minority Communities
Author: Raymond A. Zilinskas
Publisher: Praeger
Total Pages: 168
Release: 2001
Genre: Health & Fitness
ISBN:

Zilinskas and Balint and their contributors examine the divisions between minority groups and the scientific community, particularly in the area of medical and genetic research. Minorities have reasons to be skeptical of medical research in general and genetics research in particular. The sad history of the Tuskegee experiment, in which black men with syphilis were left untreated so that the course of the disease could be studied, undermined confidence in the ethics of medical researchers. More recently, publication of The Bell Curve reanimated controversy over purported genetic distinctions among the races that could have powerfully negative social implications. In contrast, as the essays make clear, the Human Genome Project, conducted in accordance with the highest ethical standards, has the potential to make dramatic positive contributions to the health of all human beings. Members of minority communities in particular—who statistically are at high risk of adverse health outcomes in the United States—have much to gain from innovative medical diagnostics and therapies that will result from the study of human genetics. Therefore, if we are to benefit fully from this new knowledge, it is vital that the distrust, skepticism, and misconceptions relating to genetics research be overcome. This is a provocative collection for scholars, students, researchers, and community leaders involved with minority and public health issues.

An Information and Dialogue Conference on the Human Genome Project (HGP) for the Minority Communities in the State of Louisiana

An Information and Dialogue Conference on the Human Genome Project (HGP) for the Minority Communities in the State of Louisiana
Author:
Publisher:
Total Pages: 76
Release: 1999
Genre:
ISBN:

Zeta Phi Beta Sorority National Educational Foundation, in cooperation with Xavier University of New Orleans, and the New Orleans District Office of the United States Equal Employment Opportunity Commission, held the Information and Dialogue Conference on the Human Genome Project for the Minority Communities in the State of Louisiana on April 16-17, 1999. The Conference was held on the campus of Xavier University in New Orleans. Community leaders, government officials, minority professional and social organizations leaders, religious leaders, persons from the educational and academic community, and students were invited. Conference objectives included bringing HGP information and a focus in the minority community on the project, in clear and understandable terms, to spread the work in the minority community about the project; to explore the likely positive implications with respect to health care and related matters; to explore possible negative results and strategies to meet them; to discuss the social, legal, and ethical implications; and to facilitate minority input into the HGP as it develops.

Information and Dialogue Conference on the Human Genome Project for the Minority Communities in the State of Louisiana

Information and Dialogue Conference on the Human Genome Project for the Minority Communities in the State of Louisiana
Author:
Publisher:
Total Pages: 5
Release: 1999
Genre:
ISBN:

Conference objectives included bringing HGP information and a focus in the minority community on the project, in clear and understandable terms, to spread the work in the minority community about the project; to explore the likely positive implications with respect to health care and related matters; to explore possible negative results and strategies to meet them; to discuss the social, legal, and ethical implications; and to facilitate minority input into the HGP as it develops.

Justice and the Human Genome Project

Justice and the Human Genome Project
Author: Timothy F. Murphy
Publisher: Univ of California Press
Total Pages: 195
Release: 2024-07-26
Genre: Medical
ISBN: 0520377931

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 Human Genome Diversity Project

The Human Genome Diversity Project
Author: Amade M'Charek
Publisher: Cambridge University Press
Total Pages: 228
Release: 2005-01-20
Genre: Social Science
ISBN: 9781139442404

The Human Genome Diversity Project (HGDP) was launched in 1991 by a group of population geneticists whose aim was to map genetic diversity in hundreds of human populations by tracing the similarities and differences between them. It quickly became controversial and was accused of racism and 'bad science' because of the special interest paid to sampling cell material from isolated and indigenous populations. The author spent a year carrying out participant observation in two of the laboratories involved and provides fascinating insights into daily routines and technologies used in those laboratories and also into issues of normativity, standardization and naturalisation. Drawing on debates and theoretical perspectives from across the social sciences, M'charek explores the relationship between the tools used to produce knowledge and the knowledge thus produced in a way that illuminates the HGDP but also contributes to our broader understanding of the contemporary life sciences and their social implications.

Race Decoded

Race Decoded
Author: Catherine Bliss
Publisher: Stanford University Press
Total Pages: 281
Release: 2012-05-23
Genre: Social Science
ISBN: 0804782059

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.

Human Population Genetic Research in Developing Countries

Human Population Genetic Research in Developing Countries
Author: Yue Wang
Publisher: Routledge
Total Pages: 354
Release: 2013-11-12
Genre: Law
ISBN: 1135047103

Human population genetic research (HPGR) seeks to identify the diversity and variation of the human genome and how human group and individual genetic diversity has developed. This book asks whether developing countries are well prepared for the ethical and legal conduct of human population genetic research, with specific regard to vulnerable target group protection. The book highlights particular issues raised by genetic research on populations as a whole, such as the potential harm specific groups may suffer in genetic research, and the capacity for current frameworks of Western developed countries to provide adequate protections for these target populations. Using The People’s Republic of China as a key example, Yue Wang argues that since the target groups of HPGR are almost always from isolated and rural areas of developing countries, the ethical and legal frameworks for human subject protection need to be reconsidered in order to eliminate, or at least reduce, the vulnerability of those groups. While most discussion in this field focuses on the impact of genetic research on individuals, this book breaks new ground in exploring how the interests of target groups are also seriously implicated in genetic work. In evaluating current regulations concerning prevention of harm to vulnerable groups, the book also puts forward an alternative model for group protection in the context of human population genetic research in developing countries. The book will be of great interest to students and academics of medical law, ethics, and the implications of genetic research.

Race in Contemporary Medicine

Race in Contemporary Medicine
Author: Sander L. Gilman
Publisher: Routledge
Total Pages: 206
Release: 2013-09-13
Genre: History
ISBN: 1136764550

This collection of articles addresses contemporary debates regarding race in medicine today, answering questions from a bio-medical and social perspective.

Race to the Finish

Race to the Finish
Author: Jenny Reardon
Publisher: Princeton University Press
Total Pages: 249
Release: 2009-02-09
Genre: Science
ISBN: 1400826403

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.