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Genetic Testing Dilemmas

  • By Peter Tyson
  • Posted 03.08.12
  • NOVA

Are you curious about your genetic makeup and what it might tell you about your health? Today, as part of an emerging trend towards what's called "personalized medicine," you can get genetic tests that look for mutations and other genetic variations that may raise your chances of contracting certain common diseases or that tell you what medications may or may not work for you. But some of these tests raise thorny ethical issues, or provide information that you can't act on. Moreover, genes alone don't tell the full story. Here we outline four complex scenarios that many people today find themselves in. And then we ask: What would you do?


Scenario 1

Should you test your embryos for gene mutations or other abnormalities before having a baby?


Scenario 2

Should you ask your doctor for a genetic test, or order a direct-to-consumer test, that can offer some idea of your risk for contracting Alzheimer's later in life?


Scenario 3

You have a family risk of breast cancer. Should you ask your doctor about getting your genes tested for mutations that increase your risk?


Scenario 4

Should you get a direct-to-consumer genetic test to help better take control of your health?


Each scenario covers some—but by no means all—of the considerations people mull over before taking such tests, and each includes the reactions of people who have either taken a genetic test, considered doing so, or decided not to. Two times in each scenario, at the beginning and again at the end, you will make a choice—yes, no, or unsure—about whether you would get tested. After the second time, you will see what others decided. (Only your choices will be recorded, not your name or any other identifying information.)

There are no right or wrong answers to these questions. Each person and each family has its own preferences, needs, and experiences, and genetic testing may make sense for some people but not for others. Also, this feature only touches on the complex practical and emotional issues surrounding genetic tests, and it does not go into the scientific and medical nuances and complexities thereof; it is meant only to get you started thinking about the subject. For more information, see Sources at the bottom of the page. Note that all individuals in this feature labeled "Anonymous" participated in a research study conducted by Doris Teichler Zallen and described in her book To Test or Not to Test (see Sources).

Peter Tyson is former editor in chief of NOVA Online.

Sources

General

Collins, Francis S. 2010. The Language of Life: DNA and the Revolution in Personalized Medicine. HarperCollins.

Davies, Kevin. 2010. The $1,000 Genome: The Revolution in DNA Sequencing and the New Era of Personalized Medicine. Free Press.

Elton, Catherine. 2009. "The Burden of Knowing." Boston Magazine. January.

Green, Ronald M. 2007. Babies by Design: The Ethics of Genetic Choice. Yale University Press.

Harmon, Amy. 2006. "Couples cull embryos to halt heritage of cancer." The New York Times, 3 September.

Zallen, Doris Teichler. 2008. To Test or Not to Test: A Guide to Genetic Screening and Risk. Rutgers University Press.

Credits

The author would like to thank Doris Teichler Zallen, author of To Test or Not to Test (see Sources, General), for reviewing this feature for accuracy and for her kind permission to quote extensively from her book. Thanks also to Lars Bertram, M.D., Head of the Neuropsychiatric Genetics Group at the Max-Planck Institute for Molecular Genetics; Mary-Claire King, M.D., Ph.D., at the University of Washington School of Medicine; and Mark Hughes, M.D., Ph.D., Senior Scientist and Director at the Genesis Genetics Institute. Thanks, finally, to Mary Crowley and Josephine Johnston of the Hastings Center (www.thehastingscenter.org) for helpful comments on the text.

Producer:
Peter Tyson
Designer:
Kim Ducharme
Developer:
Daniel Hart

Images

Intro: hand with pen over DNA sequencing
Jacob Halaska/Photolibrary/Getty Images
Page 1: IVF embryo testing
Pascal Goetgheluck/Photo Researchers, Inc.
Page 2: scans of normal (right) and Alzheimer's brains
Science Source/Photo Researchers/Getty Images
Page 3: woman crossing her arms
Helen McArdle/Photo Researchers, Inc.
Page 4: close-up of DNA sequencing gel
Steven Puetzer/Photographer's Choice RF/Getty Images

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