Congress Inadvertently Legalizes Sharing of Genetic Information Without Patient Consent

I offer you my latest warm fuzzies post.

Even your jeans genes aren't private.

"While authors of the recently passed Genetic Information Nondiscrimination Act of 2008 (H.R. 493) had good intentions, the bill inadvertently legalizes the sharing of genetic information without patient consent," says Sue Blevins, president of the Institute for Health Freedom (IHF). "It does so by applying HIPAA [Health Insurance Portability and Accountability Act] regulations to genetic data."

Blevins points out, "HIPAA regulations permit data sharing without patient consent in connection with treatment, payment, and oversight of the health- care system ('health-care operations'). Thus, by passing a bill that says HIPAA regulations apply to genetic information, Congress unintentionally legalized the sharing of information among many health-care 'covered entities' without patient permission."

The bill passed the Senate late last month, a year after the House approved its own version. Differences between the two were resolved May 1, and the final bill has been sent to President Bush.

In a letter published in the Baltimore Sun regarding the Senate's vote on the anti-discrimination bill, Janis G. Chester, M.D., president of the American Association of Practicing Psychiatrists, stressed: "...A person's genetic test results, and all of his or her medical data, should not be available to anyone without the patient's consent. One's employer should not even know he or she has had testing done, let alone know the results. The sad fact is that the regulations under the Health Insurance Portability and Accountability Act [HIPAA], which were intended to extend patient privacy as we moved from a paper-based system of medical records to a digital system, are a sham. HIPAA allows the routine release of personal health information without patient consent or knowledge, and even over a patient's objection..."

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