KHN Morning Briefing

Summaries of health policy coverage from major news organizations

Law Banning Genetic Discrimination Doesn’t Apply To Some Insurers

NPR examines a key loophole in the law designed to keep health insurers from raising rates or denying coverage because of genetic issues. The law doesn't apply to life, disability or long-term-care insurance.

NPR: It's Legal For Some Insurers To Discriminate Based On Genes
There's a federal law that's supposed to protect people from having their own genes used against them, the Genetic Information Nondiscrimination Act, or GINA. Under GINA, it's illegal for an employer to fire someone based on his genes, and it's illegal for health insurers to raise rates or to deny coverage because of someone's genetic code. But the law has a loophole: It only applies to health insurance. It doesn't say anything about companies that sell life insurance, disability insurance or long-term-care insurance (Schultz, 1/17).

Meanwhile, a new study shows that people who offer their DNA for medical research may not be able to remain anonymous.

NPR: Anonymity In Genetic Research Can Be Fleeting
People who volunteer for medical research usually expect to remain anonymous. That includes people who donate their DNA for use in genetic studies. But now researchers have shown that in some cases, they can trace research subjects' DNA back to them with ease. And they say the risk of being identified from genetic information will only increase (LaCapra, 1/17).

Medpage Today: No Privacy Guarantee For Genomic Data
Supposedly anonymous individuals who have contributed their genomic information for research can sometimes be identified through free, publicly available Internet tools, researchers found. An effort to find the full names of 10 participants in a Utah-based genomic research project was successful for five of them, reported Yaniv Erlich, of the Whitehead Institute for Biomedical Research in Cambridge, Mass., and colleagues. In fact, the researchers said in a report in the Jan. 18 issue of Science, they were able to identify not only the participants but their entire families, a total of nearly 50 people -- relying entirely "on free, publicly available resources," they wrote (Gever, 1/17).

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