Genetic Protection

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Does diabetes run in your family? Have you had to describe your parents’ medical conditions on a health insurance application? Have you been asked to undergo genetic testing after receiving a medical diagnosis? If so, you may benefit from the Genetic Information Nondiscrimination Act (GINA), a law that goes into effect at the end of this week. Signed by President George W. Bush last year after near-unanimous support in Congress, the act prohibits discrimination by employers and health insurers based on genetic information.

According to an article in The New York Times, genetic information is broadly defined under the law not only as personal genetic traits — such as having a gene associated with cancer, diabetes, or anything else — but also as family medical history. Health insurers and employers will no longer be allowed to include questions about the health of family members on mandatory applications, or even to offer incentives to fill out voluntary questionnaires on the subject. The purpose of the law is not only to protect employees and health insurance consumers from discrimination, but also to encourage the development of “personalized medicine” based on a patient’s genetic profile. Many people, the law’s authors assume, will not consent to helpful genetic tests without assurance that the results will not be used against them.


But GINA does not totally prohibit keeping track of genetic information — just collecting it intentionally. It includes exceptions for information that is overheard inadvertently or collected through obituaries. However, employers are not allowed to use this information to make employment decisions in any way. The act does not apply to life insurance, for which genetic discrimination remains legal.

What do you think — have you been discriminated against because of your family’s medical history? Would you trust your employer to collect information from obituaries or conversations, as GINA allows, but not to use it against you? Should GINA go further, covering life insurance or prohibiting insurance companies from looking at lab tests that may suggest knowledge of a health risk in the family? Do you think GINA could lead to false allegations of discrimination if an employee is laid off or fired? Leave a comment below!

[Here is a trailer for the 1997 movie Gattaca, depicting a future in which genetic testing is used to determine who is fit for education, employment, and even romantic interest. Will GINA help save us from this fate?]

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