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Genetic Information Nondiscrimination Act Passed
The Genetic Information Nondiscrimination Act passed by a vote of 420-3 in the House of Representatives today. The act makes it illegal to deny someone health insurance or job opportunities based on genetic information.
The chief sponsor of the bill, Representative Louise M. Slaughter (D-NY) introduced a similar bill twelve years ago. There have been repeated instances in which employers have discriminated against people with family histories of sickle cell anemia, Huntington's disease, as well as various forms of cancer.
A poll conducted by the Genetics and Public Policy Center at Johns Hopkins indicates that people have a wide variety of concerns:
The act also has the support of the White House; a statement issued on behalf of the President stated "Concern about unwarranted use of genetic information threatens the utilization of existing genetic tests as well as the ability to conduct further research."
The act makes clear that genetic discrimination is criminalized in the same way as other forms of discrimination. Also, the confidentiality of genetic information is covered by the same provisions that cover the rest of the medical record.
A variety of science fiction movies and books have dealt with this topic, visualizing the problems clearly. For example, in the 1997 film Gattaca, genetic standards for employment are strictly enforced; otherwise qualified individuals are refused employment solely on the basis of genetic information. See DNA Fingerprint Database For Workers Proposed for details.
Read the text of the Genetic Information Nondiscrimination Act; via
ABC News and an earlier post from Wired.
... individual patients who could benefit from genetic testing are in some cases foregoing it out of concern over possible repercussions. A 2004 study of 470 people with a family history of colorectal cancer showed that nearly half rated their level of concern about genetic discrimination as high. Those individuals with high levels of concern indicated that they would be significantly less likely to consider even meeting with a health care professional to discuss genetic testing, or to undergo testing.
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