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Ethical, Legal & Social Issues

As human knowledge about genetics grows, so have the difficult questions about how to apply it. Cloning, stem cells, genetic testing—DNA technology has been the focus of much debate. As human knowledge about genetics grows, so have the difficult questions about how to apply it. When researchers pull apart the human genome and look inside, how much do culture and shared assumptions influence what they see? Will we have to change our views about our relationship to the life around us? If we can manipulate life or even create new forms, should we limit our use of those skills? Who owns the information gleaned from the genome and how should individual privacy be protected? Is there a responsibility to distribute the fruits of science—especially those funded by taxpayers—equitably? Genetics today has its roots in the U.S. eugenics movement at the turn of the 20th century, in which scientists hoped to guide human evolution by preventing “unfit” people from reproducing. In widely supported programs, women and men judged mentally feeble or criminally inclined were sterilized—without consent and often without their knowledge. Sterilizations in mental institutions continued through the mid-1970s. In 1988, the U.S. Congress funded the National Institutes of Health and the Department of Energy to take on the Human Genome Project. In recognition of this history as well as the new territory scientists were likely to uncover, Dr. James Watson, who led the NIH side, asked that three percent of funding be dedicated to ethical, legal and social issues. The goals of this part of the project included not just research and education, but also public discussions of the best ways to apply genetic knowledge.

Additional Resources

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Genetics: Issues of Social Justice, Ted Peters (ed.) , The Pilgrim Library of Ethics, Cleveland, Ohio, p.x, 262 p., (1998)
Theologians, ethicists and legal experts contribute their perspectives on genetics and society.
Xenogenesis, Octavia E. Butler , New York, NY, p.264 p., (1987)

This science fiction series is a good read and raises fundamental questions about the superiority of and dignity of the human genome and respect for diversity. Titles include Adulthood Rites, Dawn, and Xenogenesis. Ms. Butler is the winner of the Hugo and the Nebula awards, and a MacArthur Foundation award recipient.

Book Chapters

Clairvoyance and Caution: Repercussions from the Human Genome Project, Nancy Wexler , The Code of Codes: Scientific and Social Issues in the Human Genome Project, Cambridge, Mass., p.x, 397 p., (1992)
Nancy Wexler discusses the search for the Huntington's disease gene and the problems of undergoing a predictive test when no prevention or cure is available.

Journal Articles

Potential Biohazards of Recombinant DNA Molecules, Paul Berg , Proceedings of the National Academy of Sciences of the United States of America, 07/1974, Volume 71, Number 7, p.2593-4, (1974)
This original call for a moratorium on recombinant DNA research, written by Paul Berg, is known as "The Asilomar Declaration."

Web Sites

Access Excellence: About Biotech, National Health Museum , (2007)
Want to learn what biomining is? Ever heard of Herman the Bull? Head over to this educational site run by the National Health Museum (and originally created by biotech giant Genentech), and find out different ways that companies are applying genetic technology to everything from livestock to orchids. Along with information on careers in biotech, you can find articles on bioethics and a good section on the history of biotechnology from 6000 BC to today.
Bioethics.net: American Journal of Bioethics online, University of Pennsylvania: Center for Bioethics & Department of Medical Ethics; Stanford University: Center for Biomedical Ethics; M.I.T. Press; Bioethics Education Network , Cambridge, Mass.Philadelphia, (2007) Abstract
The American Journal of Bioethics (online) features frequently updated news about stem cell research, policy and regulation.
Genewatch, Council for Responsible Genetics , Boston, MA, p.v., (2007)
The Council for Responsible Genetics (CRG) Web site covers scientific, medical and bioethical issues from the perspective of the organization's goals to promote public debate and to advocate for socially responsible use of new technologies. Tables of contents and selected articles are available on the site.
Image Archive on the American Eugenics Movement, Dolan DNA Learning Center, Cold Spring Harbor Laboratory , (2007)
The Eugenics Record Office at Cold Spring Harbor, New York, was the center of American eugenics research from 1910–1940. Here you'll find a wealth of material mostly from that site, including numerous reports, articles, charts and pedigrees that were considered scientific "facts" in their day, as well as essays by modern scholars.
Stem Cell Information, National Institutes of Health , (2007)
This frequently updated site contains a wealth of information on stem cells. You will find proposed federal guidelines, congressional testimony and a White House fact sheet on embryonic stem cell research. Don't miss the excellent primer "Stem Cell Basics" and the NIH report on stem cells, "Stem Cells: Scientific Progress and Future Research Directions." Read advisory and scientific papers on such topics as "Can Stem Cells Repair a Damaged Heart? and "Rebuilding the Nervous System With Stem Cells."
The ELSI Working Group, National Human Genome Research Institute , (2007)
The NIH-DOE Working Group on the Ethical, Legal and Social Issues of Genome Research — its full name is a mouthful, but ELSI is the premier source for information on the ethical, legal and social implications of genetic research.