When Your Boss Wants Your DNA

RENEE MONTAGNE, host:

And as we mentioned earlier, there's a new law protecting your genetic information that has just gone into effect. Health insurers are prohibited from using that information to make decisions about the insurance you get or how much it cost you, and your employer can't collect your genetic profile or your family medical history to make decisions about hiring, firing or job promotions.

NPR's Joseph Shapiro reports.

JOSEPH SHAPIRO: Last month, Matt Williams, an adjunct professor at the University of Akron, opened an email from his bosses about the school's new rules for hiring.

Professor MATT WILLIAMS (University of Akron): I clicked on the link to the room and was absolutely blown away when I saw the reference to collecting DNA samples.

SHAPIRO: The university was saying it could ask new workers for a DNA sample, to run background checks. But Williams knew his DNA could also be used to discover the most private of information about his health, like his genetic risk for cancer, heart disease or mental illness.

Prof. WILLIAMS: I don't want to say necessarily that the university had any mal-intent per se. The problem is, if the university is maintaining this sort of information on its employees, the temptation to use that information is simply far too great in the future.

SHAPIRO: To Williams, it was one more insult in the hard life of an adjunct professor. So he quit.

A spokeswoman for the University of Akron says the policy was proper but that it's now under review.

Susannah Baruch of the Genetics and Public Policy Center at Johns Hopkins University says the school's policy seems to violate the Genetic Information Nondiscrimination Act or GINA.

Ms. SUSANNAH BARUCH (Law and Policy Director, Genetics and Public Policy Center at Johns Hopkins University): Most generally, GINA prohibits health insurers and employers from using your genetic information against you, to discriminate against you in providing health insurance or in making hiring decisions and firing decisions and all the other things that employers do.

SHAPIRO: There are a few exceptions. The law doesn't apply to employers with fewer than 15 workers. And while it covers health insurance, it doesn't apply to life or long-term care insurance.

It took over a decade to get GINA through Congress. Baruch says since then, genetic medicine has gone from an imagined frontier to scientific reality.

Ms. BARUCH: Genetic medicine is expanding dramatically. So, for example, there are genetic tests available that can give you an idea of your increased likelihood of developing cancer. And once you have that information, you can do things to minimize your risk. You can pursue more preventive or early detection kind of care and really increase the chances that the cancer won't affect you.

SHAPIRO: For some medicines, there's also testing to see if the drug will even work for an individual, if it will cause side effects and what amount is the most effective.

But until now, Baruch says, people passed up genetic testing that could have helped them. They kept information hidden, even from their own doctors, because they had reason to fear that genetic information would be used against them.

Ms. BARUCH: Alleviating the fear was one of the primary purposes of GINA, so that we would all benefit from these advances in genetic medicine, rather than having to hide from them.

SHAPIRO: Now, says Baruch, patients and employers need to be educated about these benefits and about the new law.

Joseph Shapiro, NPR News.

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MONTAGNE: And you can find out what the Genetic Nondiscrimination Act does and doesn't cover at our Web site, npr.org.

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MONTAGNE: This is MORNING EDITION from NPR News. Transcript provided by NPR, Copyright National Public Radio.