Anti-Discrimination Bill Inadvertently Legalizes Sharing of Genetic Information Without Patient Consent

“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 regulations to genetic data.”
“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 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.”

Medical privacy still isn’t protected

The Sun’s article on the Senate’s vote to bar discrimination based on the results of genetic testing (“Measure would bar use of information by insurers, employers,” April 25) failed to address the key problem with personal medical information in America: Why do insurers, employers and others have access to the data in the first place?

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.

Experts argue over benefits of genetic testing

A panel of cutting edge experts on healthcare and genetics duked it out at Wednesday’s Bio-IT World’s Sixth Annual Conference over the potential benefits and risks of human genome information in the hands of an individual.
Jeffrey M. Drazen, MD, editor-in-chief of the New England Journal of Medicine, professor at Harvard Medical School and a practicing physician, was skeptical.
Drazen, who co-authored an article published in January’s edition titled “Letting the Genome out of the Bottle – Will We Get Our Wish?” said people are better off sticking to a diet and exercise regimen than getting their genome read.
Drazen was extremely speculative over privacy issues and questioned the benefits of genomic readings before policy and end-use results prove it is useful or safe. “What we have now has promise, but we’re a long way from utility,” he said. “As a physician, I want to see the results.”