When Your Boss Wants Your DNA

Last month, Matt Williams, an adjunct professor at the University of Akron, opened an e-mail from his bosses about the school's new rules for hiring and was "absolutely blown away," he says, "when I saw the reference to collecting DNA samples."

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.

To Williams, who taught in the School of Communications, it was one more insult in the hard life of an adjunct professor. (He's an officer in a national organization, New Faculty Majority, that advocates for adjunct professors.) He says adjuncts at the University of Akron sign new contracts from year to year, so he expected to be counted as a new worker the next time his contract came up.

So he quit.

"I don't want to say necessarily that the university had any mal-intent per se," he says. "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."

Genetic Information Nondiscrimination Act (GINA)

The law was signed in May 2008 and went into full effect Nov. 21, 2009.

— Prohibits employers from requesting, requiring or purchasing genetic information about an employee or an employee's family member.

— Prohibits health insurers from requesting or requiring a person to take a genetic test.

— Forbids the use of a person's genetic information by health insurance companies for determining eligibility or insurance premiums.

— Does not interfere with health care workers' ability to request that a person or family member take a genetic test, or to provide patients with information on genetic tests that are available.

Source: The Genetics and Public Policy Center at Johns Hopkins University

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

The Law

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

"Most generally," she says, "GINA prohibits health insurers and employers from using your genetic information against you." The law went fully into effect Nov. 21, and it prevents health insurers from collecting genetic information to make decisions about the insurance people get or how much it costs. The law also says an employer can't use it to make decisions about hiring, firing or job promotions.

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.

The Science

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

"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."

For some medicines, there is testing to see whether they'll even work for an individual, whether the medication will cause side effects and what dose 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. "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," Baruch says.

Now, she says, patients need to be educated about these benefits, and employers have to learn that they can't gather genetic information or family history of their workers.

Comments

 

Please keep your community civil. All comments must follow the NPR.org Community rules and terms of use, and will be moderated prior to posting. NPR reserves the right to use the comments we receive, in whole or in part, and to use the commenter's name and location, in any medium. See also the Terms of Use, Privacy Policy and Community FAQ.