GENES & SOCIETY

Radio Programs | General Resources | Ethics | Discrimination | Eugenics | Regulation & Privacy

Genetic information has its consequences, a little like the forbidden fruit - and it was bound to get the attention of politicians, lawyers, and insurance agents. Explore this category to learn more about the social, legal, and ethical issues of genetic research. Could the results of a genetic test influence your health insurance and job prospects?

No discussion of genetics and society would be complete without mentioning eugenics, the practice of increasing the share of "good" genes in a population. World War II Nazism took eugenics to unforgettable extremes, but some say eugenics is quietly making a comeback, one individual choice at a time. Read Eugenics for more.

Last updated: February 18, 2005

Radio Programs

• Genetic Medicine - Prescription for Conflict (first distributed in November 2001)
  
  
• Genetics of Infectious Disease - Planet of the Bugs: The Never-Ending Tale (first distributed in November 2001)
  
  
• Genetics of Aging & Longevity - Search for the Fountain of Youth (first distributed in November 2001)
  
  
• Prenatal Genetic Testing - Do You Really Want to Know Your Baby's Future? (first distributed in November 1998)
  
  
• Predictive Genetic Testing - Do You Really Want to Know Your Future? (first distributed in November 1998)
  
  
• Gene Therapy - Medicine for Your Genes (first distributed in November 1998)

On the Web

• GeneWatch
  
  The Council for Responsible Genetics (CRG) website 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 their website.

Books

• Redesigning Humans: Our Inevitable Genetic Future by Gregory Stock. Houghton Mifflin, 2002
  
  Gregory Stock, director of the UCLA School of Medicine's Program on Medicine, Technology and Society puts a positive spin on the possibilities of genetic engineering on human health and happiness.
  
  
• Our Posthuman Future: Consequences of the Biotechnology Revolution by Francis Fukuyama. Farrar, Straus & Giroux, 2002
  
  Fukuyama, author of the influential book, The End of History, and member of the White House Council on Bioethics suggests that genetic manipulation will ultimately change what it means to be human.
  
  
• Assessing Genetic Risk - Implications for Health and Public Policy by L. B. Andrews, J.E. Fullerton, N.A. Holtzman and A.G. Motulsky. National Academy Press, 1994
  
  
• Biology as Ideology: The Doctrine of DNA by Richard Lewontin. Harperperennial, 1993
  
  A classic treatise, by a leading geneticist, on how pure science is shaped by social and political forces.
  
  
• The Code of Codes: Scientific and Social Issues in the Human Genome Project by Daniel J. Kevles, Leroy Hood (eds.). Harvard Univ Press, 1992, 1993
  
  One of the best books on the subject. Chapters by key thinkers and researchers from an array of disciplines make this book a must-read. Good bibliography and glossary.
  
  
• The DNA Mystique: The Gene as a Cultural Icon by Dorothy Nelkin and M. Susan Lindee. W H Freeman & Co, 1996
  
  You'll enjoy this entertaining and enlightening exploration of the symbolic meanings of genetics in popular culture, and their implications for public policy and society.
  
  
• Dangerous Diagnostics: The Social Power of Biological Information by Dorothy Nelkin and Lawrence Tancredi. Basic Books, 1989, 1994
  
  Examinations of the ethical and social impact of new biological technologies, including genetics.
  
  
• Exploding the Gene Myth by Ruth Hubbard and Elijah Wald. Beacon Press, 1999 (paperback)
  
  Clear explanations of the science of genetics, and strong ideas about both the real and the potential effects of genetic knowledge, by Harvard professor emerita Ruth Hubbard.
  
  
• Genetics: Issues of Social Justice by Ted Peters (ed.). Pilgrim Press, 1998
  
  Theologians, ethicists and legal experts contribute their perspectives on genetics and society.
  
  
• Modest-Witness, Second-Millennium: Femaleman Meets Oncomouse: Feminism and Technoscience by Donna J. Haraway and Lynn M. Randolph. Routledge, 1996
  
  There's a lot to chew on when the science and symbology of genetics meet postmodern analysis in the hands of Donna Haraway, who teaches science studies, feminist theory, and women's studies in the History of Consciousness Program at the University of California, Santa Cruz.
  
  
• Proceed with Caution: Predicting Genetic Risks in the Recombinant DNA Era by Neil A. Holtzman. Johns Hopkins Press, 1989

  The science, practice, ethics, and regulation of genetic testing. From his position at The Johns Hopkins School of Medicine , Neil Holtzman shows how awareness of the historic troubles caused by genetics policies in the past must be weighed with the potential of emerging new genetic tests and treatments.

Ethics

• Council for Responsible Genetics

  The Council for Responsible Genetics (CRG) is a nonprofit organization of scientists, public health advocates, and others in the biotechnology area. The group focuses on education in the areas of genetic discrimination, patenting of life forms, food safety and environment. The site includes policy statements, action alerts and links to other organizations as well as selected articles from the CRG's bimonthly magazine, GeneWatch.

• National Information Resource on Ethics & Human Genetics

  Funded by the National Human Genome Research Institute (NHGRI) and the National Institutes of Health (NIH), this site provides access to an ethics and human genetics database, an online book catalog, and links to key organizations.
  
  
• Special Report: The Ethics of Genetics. Guardian Unlimited
  
  An interesting series of articles from the Guardian.
  
  
• Governing the Genome. The Nation, December 10, 2001
  
  Ralph Brave explores the social implications of genetic research at the beginning of the new century in this article from the liberal Nation.
  
  
• Genetics and Ethics Topics. Counterbalance
  
  These web pages are intended to bring you a Christian perspective on genetics and ethics.
  
  
• The ELSI Working Group (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.
  
  
• Bioethics.net - The American Journal of Bioethics Online
  
  The AJOB site is updated daily with articles from the journal, news stories, and links. Start with Bioethics for Beginners, and check out topical collections on hot subjects like stem cells and cloning.
  
  
• National Bioethics Advisory Commission
  
  President Clinton set up the NBAC in 1995 to "identify broad principles to govern the ethical conduct of research" on human biology and behavior. The Commission was in operation until October 2001, and on this site you'll find its reports and recommendations on issues such as human subjects research, stem cells, and cloning.

• "Ethical and Legal Implications of the New Genetics," by Dorothy Wertz. Social Science and Medicine 35, 1992
  
  
• "Society and the Not-so-New Genetics: What are We Afraid Of?" by Dorothy Wertz. Journal of Contemporary Health Law and Policy 13, 1997
  
  
• "Life in the XY Corral" by Anne Fausto-Sterling. Women's Studies International Forum 12:319-331, 1989

• "Genetic Technology and Reproductive Choice: Nature, Nurture, and the Human Genome Project" by Evelyn Fox Keller, in The Code of Codes, edited by Daniel Kevles and Leroy Hood. Harvard University Press, 1992
  
  
• "An Ethics for Autonomy" by Ruth Schwartz Cowan, in The Code of Codes, edited by Daniel Kevles and Leroy Hood. Harvard University Press, 1992
  
  
• "Moral Pioneers: Women, Men and Fetuses on a Frontier of Reproductive Technology," by Rayna Rapp, in Gender at the Crossroads of Knowledge: Feminist Anthropology in the Postmodern Era, Micaela di Leonardo (ed.). University of California Press, 1991

• Challenging Racism and Sexism: Alternatives to Genetic Explanations (Genes and Gender, Vol.7), by Ethel Tobach and Betty Rosoff (eds.). Feminist Press of CUNY, 1994
  
  
• Women and Prenatal Testing: Facing the Challenges of Genetic Technology by Karen H. Rothenberg and Elizabeth J. Thompson. Ohio State University Press, 1994
  
  
• Am I My Brother's Keeper?: The Ethical Frontiers of Biomedicine by Arthur L. Caplan. Indiana University Press, 1998
  
  
• Gene Mapping: Using Law and Ethics as Guides by George Annas and Sherman Elias (eds.). Oxford, 1992
  
  George J. Annas of Boston University Schools of Medicine and Public Health, is an expert on law and bioethics. He's the author of the ACLU's guide to patient rights.
  
  
• The Lives to Come: The Genetic Revolution and Human Possibilities by Philip Kitcher. Touchstone Books, 1997
  
  
• Playing God: Genetic Determinism and Human Freedom by Ted Peters. Routledge, 1997
  
  
• Remaking Eden: Cloning and Beyond in a Brave New World by Lee M. Silver. Avon Books, 1997
  
  An ethicist's provocative consideration of the probable future of new genetic technologies in today's economic, social and ethical environments. Has a special emphasis on new reproductive technologies.
  
  
• Simians, Cyborgs and Women: The Reinvention of Nature by Donna Haraway. Routledge, 1991

Discrimination

• Committee Hearing: The Committee on Energy and Commerce
  
  This House of Representatives hearing of the Subcommittee on Commerce, Trade, and Consumer Protection covered the potential for discrimination in health insurance based on predictive genetic tests.
  
  
• Genetic Testing - Health Care Issues. Genentech's Access Excellence, 1992
  
  A 1992 interview with health policy expert Neil Holtzman, MD, on what genetic testing means for insurance and health care.
  
  
• Ashkenazi Jewish Genetic Diseases
  
  To date, researchers have found many gene variations related to diseases that appear most commonly among people of Ashkenazi descent.  This has made many Jews understandably edgy.  Here's useful information from the Albert Einstein Healthcare Network.

• "Jewish Leaders Seek Genetic Guidelines..." by Sally Lehrman. Nature 389, 1997
  
  News story highlighting concerns about stigmatization of Jewish people as a result of genetic research on members of their community. With accompanying editorial.
  
  
• "The complex relationship of genetics, groups and health: what does it mean for public health," by Ellen Wright Clayton. Journal of Law, Medicine & Ethics, Summer 2002.
  
  Sometimes genetic populations such as ethnic groups are more or less susceptible to certain diseases, or receptive to certain treatments. There are advantages to identifying higher-risk groups, but pitfalls as well.

• "Health Insurance, Employment Discrimination, and the Genetics Revolution" by Henry T. Greely in The Code of Codes, edited by Daniel Kevles and Leroy Hood. Harvard University Press, 1992

• Dangerous Diagnostics: The Social Power of Biological Information by Dorothy Nelkin and Lawrence Tancredi. Basic Books, 1989
  
  
• Exploding the Gene Myth: How Genetic Information is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators, and Law Enforcement by Ruth Hubbard and Elijah Wald. Beacon Press, 1997
  
  Clear explanations of the science of genetics, and strong ideas about both the real and the potential effects of genetic knowledge, by Harvard professor of biology emerita Ruth Hubbard.
  
  
• Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era by Mark A. Rothstein (ed.). Yale University Press, 1997
  
  
• Proceed with Caution by Neil A. Holtzman. The Johns Hopkins University Press, 1989
  
  
• Toward the 21st Century: Incorporating Genetics into Primary Health Care by Nancy Touchette. Cold Spring Harbor Laboratory Press, 1997

Eugenics

• Image Archive on the American Eugenics Movement. Dolan DNA Learning Center, Cold Spring Harbor Laboratory
  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.
  
  
• Thumbs up for the bright, white folks: Eugenics has a loyal and respectable following in the U.S.--especially on the right. New Statesman, April 15, 2002
  
  The British Socialist weekly brings you its take on the connections between the Eugenics movement and American conservatives, from the beginning of the twentieth century to the present day.
  
  
• The Remastered Race. Wired, Volume 10, Number 5, May, 2002, pp. 68 - 74
  
  "Artificial chromosomes and in vitro screening are giving new life to the eugenics debate. The question is not whether we want to engineer embryos but how far it will go." Follow the links from this page to other relevant articles as well.
  
  
• Position Statement on Genetic Discoveries in Dwarfism. Little People of America
  
  Genetic tests are making eugenics a reality, one private decision at a time. Now that there is a prenatal genetic test for achondroplasia, the most common form of dwarfism, will "little people" become even more rare?
  
  
• Racism, Eugenics, and the Burdens of History
  
  Text of biologist/anthropologist Jonathan Marks' talk given at IX International Congress of Human Genetics, Rio de Janeiro in August 1996.
  
  
• Special Issue on Genetics and Eugenics. Searchlight
  
  A special eugenics issue features articles on the burgeoning new mix of science and politics called neuro-genetic determinism. From the archives of the Institute for the Study of Racism.

• Redesigning Humans: Our Inevitable Genetic Future by Gregory Stock. Houghton Mifflin, 2002
  
  Gregory Stock, director of the UCLA School of Medicine's Program on Medicine, Technology and Society puts a positive spin on the possibilities of genetic engineering on human health and happiness.
  
  
• Our Posthuman Future: Consequences of the Biotechnology Revolution by Francis Fukuyama. Farrar, Straus & Giroux, 2002
  
  Fukuyama, author of the influential book, The End of History, and member of the White House Council on Bioethics suggests that genetic manipulation will ultimately change what it means to be human.
  
  
• Back Door to Eugenics by Troy Duster. Routledge, 1990

  This excellent treatment of current and historic eugenic policies and attitudes is out of print, but well worth the search.

• Bodies in Glass: Genetics, Eugenics, Embryo Ethics by Deborah Lynn Steinberg. Manchester University Press, 1997
  
  
• Eugenics, Human Genetics and Human Failings by Pauline Mazumdar. Routledge, 1992
  
  
• In the Name of Eugenics by Daniel Kevles. Harvard University Press, 1995
  
  
• The Perfect Baby: A Pragmatic Approach to Genetics by Glenn McGee. Rowman & Littlefield, 1997
  
• Who's Afraid of Human Cloning? by Gregory Pence. Rowman & Littlefield, 1998
  
  An ethicist looks at the awesome potential of current genetic technologies.

Regulation & Privacy

• Governing the Genome. The Nation, December 10, 2001
  
  Ralph Brave explores the social implications of genetic research at the beginning of the new century in this article from the liberal Nation.
  
  
• Background Information on Clinical Research. Centerwatch
  
  Ever wondered how new therapies and drugs get to the market? This page tells you the different stages of drug approval, which also apply to genetic therapies.
  
  
• Keeping Your Genes Private. GeneLetter, March 1, 2001
  
  An article by Sally Lehrman
  
  
• Genetic Privacy. Genetics and Public Issues
  
  A short overview of the concept of genetic privacy, and links to various international documents recognizing privacy as a universal right.
  
  
• Biotech Policy and Regulation News
  
  Information on everything from Congressional genomics hearings to voting records on relevant bills. Brought to you by the Biotechnology Industry Organization.
  
  
• NIH Recombinant DNA Advisory Committee (RAC)
  
  
• Database of Federal and State Laws, Statutes & Regulations. NHGRI/NIH
  
  Here you can research laws, legislation, regulation and more --  in the areas of privacy, informed consent, employment discrimination, and genetic testing. A project of the National Human Genome Research Institute (NHGRI) and the National Institutes of Health (NIH).

• Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era by Mark A. Rothstein. Yale University Press, 1997
  
  Rothstein is the director of the Health Law and Policy Institute of the University of Houston Law Center.