[Infowarrior] - New Law to Bar Misuse of Genetic Testing by Employers

[Richard Forno]

November 16, 2009
New Law to Bar Misuse of Genetic Testing by Employers
By STEVEN GREENHOUSE
http://www.nytimes.com/2009/11/16/business/16genes.html?_r=1&hp=&pagewanted=print

A landmark antidiscrimination law — the Genetic Information  
Nondiscrimination Act — will take effect in the nation’s workplaces  
next weekend, prohibiting employers from requesting genetic testing or  
considering someone’s genetic background in hiring, firing or  
promotions.

The act also prohibits health insurers and group plans from requiring  
such testing or using genetic information — like a family history of  
heart disease — to deny coverage or set premiums or deductibles.

“It doesn’t matter who’s asking for genetic information, if it’s the  
employer or the insurer, the point is you can’t ask for it,” said John  
C. Stivarius Jr., a trial lawyer based in Atlanta who advises  
businesses about the new law.

The biggest change resulting from the law is that it will — except in  
a few circumstances — prohibit employers and health insurers from  
asking employees to give their family medical histories. The law also  
bars group health plans from the common practice of rewarding workers,  
often with lower premiums or one-time payments, if they give their  
family medical histories when completing health risk questionnaires.

“Genetic information is very broad,” said J. D. Piro, a principal in  
the Health Care Law Group at Hewitt Associates. “It doesn’t simply  
include my own genetic information, such as do I have a risk for  
cancer. It also includes my family medical history — do I have any  
relatives who have had cancer or leukemia.”

Genetic tests help determine whether someone is at risk of developing  
an inherited disease or medical condition. These tests identify  
variations in people’s genes, like whether a woman has a  
predisposition for ovarian cancer.

Such testing can help determine which course of treatment might work  
best for fighting a specific cancer or for helping a patient’s body  
process a specific drug.

The new law (commonly called GINA) was passed by Congress last year  
because many Americans feared that if they had a genetic test, their  
employers or health insurers would discriminate against them, perhaps  
by firing them or denying coverage. In a nationwide survey, 63 percent  
of respondents said they would not have genetic testing if employers  
could access the results.

“The message to employees is they should now be able to get whatever  
genetic counseling or testing they need and be less fearful about  
doing so,” said Peggy R. Mastroianni, associate legal counsel for the  
federal Equal Employment Opportunity Commission.

The act takes effect on Nov. 21 for all companies with 15 or more  
employees. It applies to group health insurers whose plan years begin  
on or after Dec. 7, and it took effect for individual health insurance  
plans last May. The act does not apply to life insurers.

While the act makes it illegal for employers to intentionally acquire  
genetic information, it includes a “water cooler” exception, as in a  
case where a manager overhears one employee telling another that his  
father had a stroke.

Under the act, it is legal for a manager to learn from an obituary  
that an employee’s mother died of breast cancer. And if a manager asks  
why a worker took off a week to care for his father under the Family  
Medical Leave Act, it generally will not be considered illegal if the  
employer learns that the worker’s father has pancreatic cancer.

The act nonetheless prohibits use of such inadvertent knowledge to  
alter the terms, conditions or privileges of someone’s employment.

“The challenge becomes what if down the road, the employee has a lot  
of absences or his performance is off, and you discipline the  
employee,” said Michael P. Aitken, director of governmental affairs  
for the Society of Human Resource Management. “The employee could come  
back and say, ‘That’s because you knew I had a genetic marker.’ ”

The act and its accompanying regulations allow group health plans to  
request family medical histories to help determine whether an employee  
should be placed in a disease management or wellness program to  
combat, for instance, high blood pressure. The regulations stress that  
employees must give that information voluntarily and that the group  
plan cannot request such information before health plan enrollment or  
use it in any way for underwriting.

Under the regulations, group health plans, in seeking information for  
wellness programs, cannot attach a request for family medical history  
to any penalty or, as is far more common, any benefit. But wellness  
programs can request family medical history if there is no financial  
benefit attached.

“This can be a big deal,” said Mr. Stivarius, the Atlanta lawyer. “A  
lot of people incentivize employees to provide this family medical  
information. They give them some extra paid time off if they  
participate in surveys. Now they can’t do that.”

Mr. Piro of Hewitt said many employers were only now realizing that  
their health risk questionnaires might violate the law.

“A lot of employers have to scramble to scrub this information out of  
their health risk questionnaires,” he said. “The alternative is to  
modify their reward structures so that they’re not considered to be  
purchasing or requiring the genetic information.”

Susan Pisano, a spokeswoman for America’s Health Insurance Plans, said  
the new rules were a challenge for insurers because they were taking  
effect during the open enrollment period. She said her industry group  
disagreed with the federal agencies’ interpretation that the law bars  
incentives to encourage employees to fill out family medical histories.