Beyond THE FUTURE: The Council for Responsible Genetics

Anyone who’s ever watched the 1997 sci-fi movie Gattaca starring Ethan Hawke, Uma Thurman, and Jude Law can easily imagine what lies in store if genetic discrimination is not just discouraged, but kept in check by the courts. A recent Reuters article, “House backs bill barring genetic discrimination,” touches on some of the basic concerns: that employers and insurance companies will deny employment or insurance coverage to individuals genetically predisposed for certain diseases. The bill in question was introduced 12 years ago and is still being tweaked. It’ll be interesting to see where it goes from here.

After reading a few older articles on the subject that seemed to suggest genetic discrimination is really nothing to worry about, I read about a shocking Burlington Northern Santa Fe Railroad Company case: Last year the BNSF was charged with conducting genetic tests on employees without the employees’ informed consent. I then came across the Council for Responsible Genetics site, which lists additional recent cases of genetic discrimination. Apparently this is not a future concern after all; genetic discrimination is an active concern that deserves some active attention.

Based in Cambridge, MA, the Council for Responsible Genetics is a non-profit NGO (non-governmental organization) established in 1983 to foster “public debate about the social, ethical and environmental implications of genetic technologies.” In addition to its unique bimonthly magazine GeneWatch, which is “dedicated to monitoring biotechnology’s social, ethical and environmental consequences,” CRG offers an extensive collection of links following each article featured on its website. For more details about concerns tied to genetic testing, discrimination, and privacy see this article, then scroll down for a list of links to related materials, articles, legislation, and resources.

Bottom line as far as CRG is concerned: State and federal laws primarily address “the unlawful use of genetic data, sidestepping the question of whether employers and insurance companies should have access to genetic information in the first place.” Bottom line as far as private citizens in the U.S. are concerned: Your Constitution guarantees your right to privacy. Don’t let anyone force you to undergo genetic testing or share genetic testing results—now or at any time in the not-so-far future.

Illustration source: U.S. Department of Energy