Radio Programs | General Resources | Prenatal Testing | Preimplantation Diagnosis

Amniocentesis is a common prenatal test, often used to screen for Down syndrome and other serious problems. Did you know that amnios are a type of genetic testing? Have you considered genetic tests to predict your chance of getting breast cancer or another life-challenging disease? Can employers use genetic tests to screen current or potential workers? Find out more about different genetic tests coming to — or already available from — a clinic near you.

If you're interested in the resources here in our Gene Testing section, you might also want to check out these categories: The DNA Marketplace, Ethics, Eugenics, Discrimination, Regulation & Privacy, and Genes & Medicine.

Last updated: February 19, 2005

Radio Programs

• 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)

On the Web

• Genetic Testing: Genomics and Disease Prevention
  
  This CDC online journal presents a public health perspective on availability, policy, and prevalence of tests for genes related to a variety of diseases (for example Breast & Ovarian Cancer). You will find links to fact sheets, journal articles, texts of legislation, and much more.
  
  
• Genetic Testing/Counseling. MEDLINEplus
  
  This site is a good place to start: it links to general resources, selected recent news, and academic articles on the subject of genetic testing and counseling.
  
  
• Genetests.org
  
  The U.S. National Institutes of Health (NIH) provides funding for this site which leads you to relevant journal articles, a directory of gene-testing laboratories, and a directory of doctors specializing in genetic testing, and a useful glossary.
  
  
• "Clairvoyance and Caution: Repercussions from the Human Genome Project"
  
  A chapter by Nancy Wexler from the book, The Code of Codes (edited by Daniel Kevles and Leroy Hood. Harvard University Press, 1992) discusses the search for the Huntington's disease gene and the problems of undergoing a predictive test when no prevention or cure is available.
  
  
• Reading Genes for Disease, NPR, 2004
  
  Listen to NPR's Joe Palca conduct a series of interviews with people who faced the decision to take tests that would reveal their own genes. Originally broadcast on Weekend All Things Considered in May, 2004.
  
  
• Cancer.gov. National Cancer Institute
  
  Check out the many and varied resources on genetic testing provided by the National Cancer Institute. This is a very rich and useful site.
  
  
• Promoting Safe and Effective Genetic Testing in the United States: Final Report of the ELSI Task Force on Genetic Testing
  
  The Task Force on Genetic Testing is a subcommittee of the group of leading scientists and ethicists convened by the National Institutes of Health to study ethical, legal and social implications of the Human Genome Project.
  
  This comprehensive September 1997 report outlines guidelines for thinking about how university and commercial laboratories can best deliver genetic tests responsibly to the public. Also available in print from Johns Hopkins University Press, 1998. Neil Holtzman and Michael Watson (eds.).
  
  
• Understanding Gene Testing. U.S. Department of Health and Human Services
  
  The detailed table of contents lets you link directly to short, straightforward answers to the questions you're most interested in. There is a special focus on the genetics of cancer.
  
  
• World of Genetic Societies
  
  If you're interested in what the professionals are thinking, here's a gateway to six sites run by societies of geneticists and genetic counselors. You'll find newsletters, position papers, legislative activity, recent news on genetics and other gems such as guidelines for preparing effective slides.
  
  
• Your Genes, Your Choices. American Association for the Advancement of Science
  
  A profusely illustrated online booklet by Catherine Baker, Your Genes, Your Choices uses different real-life scenarios to introduce genetics and the complicated choices posed by genetic tests. Also available in print. There is a companion video. Contact: AAAS, Directorate for Education and Human Resources Programs, 1200 New York Ave, NW, Washington, DC 20005.
  
  
• The National Action Plan on Breast Cancer

  See the NAPBC's position paper on Hereditary Susceptibility Testing for Breast Cancer.

• Double Issue on Breast Cancer: "Breast Cancer Genes": Myths and Facts. GeneWatch 11(5-6), January 1999
  
  Information on genetic testing and the genetics of breast cancer presented by the Council for Responsible Genetics (CRG), an organization dedicated to promote informed public debate about the social, ethical, and environmental applications of new genetic technologies, and to advocate for socially responsible use of these technologies.
  
  Scroll down for articles available online from this special issue. Also see the CRG's positions on predictive genetic testing.

• Can employers use genetic tests to discriminate against workers?
  
  A landmark 2001 case involving a railroad man challenged American industry...and won! See the Wired version.

Magazine & Journal Articles

• "Should You Get the Breast Cancer Gene Test?" by Sally Lehrman. Health, Nov./Dec. 1998
  
  An examination of the marketing and promotion of tests for genetic susceptibility to breast cancer and an outline of key issues to think about if you're considering genetic analysis.
  
• "Facing Your Genetic Destiny" by Sergio Pistoi. Scientific American, February 2002
  
  Genetic testing has the potential to become much more important to medicine, now that scientists have their hands on the human genome. Read about what genetics tests can do, what they might be able to do in the future, and why it's not always good to know.

Books

• 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
  
  
• Catalog of Multilingual Patient Education Materials on Genetic and Related Maternal/Child Health Topics. The Center for Human and Molecular Genetics, New Jersey Medical School, 1995
  
  For more information about this catalog, write to: Genetic Service Outreach Program, 90 Bergen St., Ste. 5400, Newark, NJ 07103-2499; or call (973) 972-3300.
  
  
• Dangerous Diagnostics: The Social Power of Biological Information by Dorothy Nelkin and Lawrence Tancredi. Basic Books, 1989
  
  
• 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.

Prenatal Testing

On the Web

• Testing During Pregnancy. New York Online Access to Health (NOAH)
  

  This entry in New York Online Access to Health offers loads of information on the whys and wherefores of prenatal genetic tests, from a variety of authoritative sources.

• Eugenics, Reproductive Technologies, and "Choice." GeneWatch
  
  Harvard professor emeritus Ruth Hubbard weighs in on prenatal genetic testing and related issues.
  
• Disabled Peoples International (DPI)
  
  An organization of disabled people, representing 130 countries, present their position on prenatal testing.
  
  
• Do We Really Want This? Little People of America
  Little People of America, Inc., comes to terms with genetic testing.

Books

• Does It Run in the Family? A Consumer's Guide to DNA Testing for Genetic Disorders by Doris Teichler-Zallen. Rutgers University Press, 1997
  
  A geneticist and expert in public policy explains which hereditary problems can be detected, and what the tests can and can't tell you.
  
• Life As We Know It: A Father, A Family and An Exceptional Child by Michael Berube. Vintage Books, 1998
  
  The viewpoint of a family raising a child with Down syndrome, after forgoing prenatal diagnosis.

Preimplantation Diagnosis

On the Web

• Preimplantation Genetic Testing. Saint Barnabas Medical Center (New Jersey)
  
  A clear explanation from a fertility clinic, of how fertility clinics perform genetic tests on "test-tube" embryos to detect extra disease-causing chromosomes, even before they are implanted in a woman's body.