Should Bosses Have Access to Workers’ Genetic-Test Results? / WSJ

Reposted from the Wall Street Journal

U.S. Government Files First Cases Under Statute Meant to Protect Workers

By Melanie Trottman

Genetic testing is becoming a cornerstone of modern medicine—used to measure the likelihood of developing diseases from cancer to mental illness.

Employers increasingly are running up against a federal law that governs how genetic information can be used. Pictured, a DNA sample in a Petri dish. Getty Images

But as health-care providers move quickly to use the information, employers increasingly are running up against a federal law that governs how genetic information can be used.

The Genetic Information Nondiscrimination Act bars companies from asking about family medical history or genetic testing—limiting the information that some employers have used to gauge the fitness of their workers and encourage healthier lifestyles.

Asking for the information—for example, during a mandatory physical or an exam that was part of a job offer—is enough to constitute a violation. GINA also prohibits companies from using such information to hire, fire or promote employees.

Family Matters

The Genetic Information Nondiscrimination Act covers family medical history, data on genetic tests and information about requests for genetic services. Employers generally are barred from:

  • Asking for family medical history or genetic-test results during required exams.
  • Probing about the illness of an employee or a family member.
  • Requiring workers to provide family medical histories.
  • Using genetic information for hiring, firing, promotion, pay, benefits, etc.

Source: EEOC

“This is beginning to create a pretty direct conflict because in order to prevent the misuse of this information, you’re stopping good medicine,” says Larry Lorber, co-head of the Washington, D.C., labor-and-employment group at corporate law firm Proskauer Rose LLP.

The Equal Employment Opportunity Commission recently filed its first two lawsuits under GINA against companies that it says improperly collected genetic information, bringing cases against a Tulsa, Okla., fabric distributor and a Corning, N.Y., nursing home. The agency alleges that during required physical exams for employees or for people offered jobs, the companies illegally asked about family medical histories, such as heart disease, cancer and mental disorders.

The suits signal stepped up enforcement of a 2008 law signed by President George W. Bush that was intended in part to encourage more Americans to get genetic tests without fear their employers would use the information to weed out workers at risk of developing health problems.

EEOC Legal Counsel Peggy Mastroianni offers an example of how an employer could go wrong. “Someone is up for a promotion. It’s a woman, age 50, and you know early Alzheimer’s runs in her family, so you don’t promote her because you don’t know how long she’s going to last,” Ms. Mastroianni says. “There’s an absolute prohibition on doing that and there are no exceptions.”

The agency says it is sifting through about 170 claims filed by workers, applicants and former employees who say companies unlawfully asked for genetic information or used it to discriminate. Under GINA, such information includes family medical history, the results of an individual’s or family member’s genetic test and a person’s request for or use of genetic services, such as genetic counseling, Ms. Mastroianni says. With a few exceptions, the law bars employers from requesting, requiring or buying this information.

“We’ll see even more genetic information available about all of us, which is why it is so important to have laws to make sure that information is used appropriately,” says Jeremy Gruber, president and executive director of the Council for Responsible Genetics, and an early supporter of the law. Since employers aren’t scientists or doctors, he says, they “have no ability to truly understand or use this information properly.”

In May the EEOC sued Fabricut Inc., alleging the textile company required a temporary worker who had received an offer for a permanent job to disclose her family medical history. The agency says other Fabricut job applicants had to provide similar information. Without admitting wrongdoing, Fabricut settled the case, which was filed in federal court in Tulsa, Okla., agreeing to pay the worker $50,000 and to provide antidiscrimination training to employees with hiring responsibilities.

The company says it settled the case to avoid costly, protracted litigation and that the medical history “was gathered by a third-party medical provider, not Fabricut.”

The EEOC says employers must tell medical providers about restrictions under GINA.

An EEOC class-action suit against nursing and rehabilitation center Founders Pavilion Inc., also filed in May, alleges that family medical histories were sought during medical exams, which were given following a job offer and subsequently on an annual basis. Founders didn’t respond to requests for comment about the case, which is pending in federal court in Rochester, N.Y.

Since GINA went into effect, claims to the EEOC under the law have been rising steadily, reaching 762 as of September. Many have been dismissed by the agency.

But the volume of claims means many employers are at greater legal risk as genetic information has become an important tool in helping to change diet, exercise and choice of medicines and has been used to spur preventive surgery, such as mastectomies.

Most big U.S. employers offering health benefits have created wellness programs to improve employee health while cutting costs. Under GINA, employers can ask wellness-program participants questions about family medical histories only if the companies make clear that answering is optional—which some business groups say can diminish the programs’ effectiveness.

The EEOC says it is carrying out GINA’s mandate to address concerns that genetic testing could threaten someone’s job. Failure to resolve such concerns could hamper research by limiting public participation in scientific advances, the agency says.

Mr. Lorber, the Proskauer employment lawyer, says company physicals are the only ones that some people get so there is value in gathering family medical histories. He suggests an alternative to EEOC’s strict enforcement of GINA: Let physicians gather the information they need but restrict what they can share with the employers.

The agency says it considered adding an exception to its rule that would allow health-care providers to request information to determine someone’s ability to perform a job, but didn’t because there was insufficient evidence an exception was needed.

The Fabricut and Founders cases are part of the agency’s broad attack on workplace discrimination. The EEOC in recent weeks filed suits alleging that black applicants were disproportionately hurt by improper use of background checks. And the agency in the past year has increased its scrutiny of workplace barriers against pregnant women and people with disabilities.

The government’s approach to GINA hasn’t always succeeded in court. After a former Nestlé SA NESN.VX -0.30% employee filed a claim saying he was fired because of a disability and his family medical history, the EEOC sought a subpoena that would force the company to hand over the names of doctors it used for mandatory physical exams. The agency also wanted explanations about whom Nestlé hired, rejected and fired after exams.

But a federal court in Kentucky rejected the request, saying it wasn’t persuaded the EEOC “has free reign [sic] to conduct a broad, companywide investigation based upon a single allegation.” The court record indicates the employee purportedly was fired for taking excessive breaks during work shifts.

Nestlé says the EEOC has dropped the matter, but the former employee has filed suit on his own. The suit’s claims “are without merit and Nestlé will continue to vigorously defend itself,” the company says.

The agency declines to comment on the Nestlé matter.

The EEOC cases show that GINA “is broader than what many employers realize,” says Ilyse Schuman, a shareholder at employment-law firm Littler Mendelson PC. The cases “should be a wake-up call for other employers who haven’t paid attention to GINA that they need to.”