New Law Will Protect Genetic Information

October 29, 2008
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Employers should review their policies and procedures to ensure they’re in compliance with the Genetic Information Nondiscrimination Act, part of which goes into effect next spring and part of which goes into effect next fall.

The law safeguards against possible misuse of genetic information by health insurers and employers.

The act’s health insurance provisions go into effect in May. The law precludes discrimination by group health plans and health insurers against individuals based on genetic information, prohibits insurers from requiring genetic tests and from charging different premiums based on genetic information. It also prohibits insurance companies from requesting, requiring or purchasing the results of genetic tests and from disclosing personal genetic information.

The employment provisions will become effective in November. The act prohibits employers from discharging, refusing to hire, or otherwise discriminating against employees on the basis of genetic information. It also applies to employment agencies and labor unions.

The push for the new law was fueled by fear. DNA testing is readily available today and represents an advancement of science that is supposed to benefit people through new and innovative treatments and therapies, said Bill Fallon, a labor and employment attorney with Miller, Johnson, Snell and Commisky. But people have been worried that information regarding an identified genetic characteristic would be used by insurers to deny, limit or cancel health insurance, and by employers to discriminate against them in the workplace.

According to the Mayo Clinic, today there are more than 1,100 genetic tests available clinically and several hundred more in research settings.

The new measure will pave the way for Americans to take full advantage of the promise of personalized medicine because they’ll be able to have their genes tested without fear of discrimination, according to the National Genome Research Institute, an arm of the National Institutes of Health.

M.K. Holohan, the institute’s senior health policy analyst, said there’s a lot of technology available today that wasn’t there five years ago, including testing that can help people evaluate their risks for certain diseases. Testing is particularly poignant for families with a history of breast or ovarian cancer and a certain form of colorectal cancer known as HNPCC, she pointed out. Individuals with HNPCC have an 80 percent chance of developing colon cancer in their lifetime.

Holohan recalled that a couple of years ago some genetic counselors at NIH studied a group of families with the HNPCC varient. What they found was that a third of the families’ relatives refused to be tested.

“The top reason they cited was fear of losing their health insurance care. Other studies have borne this out, as well,” Holohan said. “Even if they weren’t as concerned for themselves, they were concerned about having that kind information get into their children’s medical files and ‘mark’ them. For the clinicians and genetic counselors, it was incredibly frustrating because this type of screening has shown to be lifesaving.” 

Under the new law, patients such as HNPCC family members might feel more comfortable getting genetic testing knowing that their insurance company can’t legally gain access to the information, Holohan reflected. A hopeful consequence of this is that people will be more willing to participate in clinical trials, as well, she said.

Up to this point, no genetic information discrimination case has been brought before U.S. federal or state courts, but in 2001, the U.S. Equal Employment Opportunity Commission settled the first lawsuit alleging that kind of discrimination, Holohan noted.

The way the law is written now, after a job offer has been extended to a candidate, an employer can ask the candidate essentially anything about his medical condition and history, Fallon observed. An employer might require as a condition of the job that the candidate have a physical exam. During a physical, the patient is asked about family health history and conditions or illnesses suffered by family members.

“Next November that information about family members will be ‘genetic information,’” said Fallon said. “Right now, there’s a very good chance that employers are receiving information that qualifies as genetic information under the new act. Under the new act, any manifest health condition in a relative is defined as genetic information. Even something like male pattern baldness in a family is considered genetic information.”

Current law permits an employer to subject a potential employee to as broad a medical exam as desired. The constraint on employers is the cost, Fallon explained. He said a lot of employers have stopped requiring physical exams because it’s not worth spending $100 to $500 to get medical information on a new employee, especially for jobs that are not physically demanding. 

Employers who use genetic information in their hiring, firing or compensation decisions will face penalties. Fallon said employers can be liable for lost wages and benefits, punitive damages of up to $300,000 for each violation, plus attorney fees. There’s no cap on the loss of pay, he added. 

Fallon said employers should begin to prepare for the changes ahead, and the sooner the better. He said that the process often takes longer than employers expect. Employers ought to inventory their practices and policies that might expose them to employee medical information or medical information on members of the employee’s family, Fallon recommended.

“What are you doing in terms of pre-employment or during-employment medical exams? What are doing in terms of wellness programs? What are you doing in terms of maintaining the confidentiality of employees’ health information right now when it comes to you? You have to be absolutely sure you have all that stuff locked down. It’s time to ramp up corporate sensitivity to the information we sometimes take for granted.” HQ

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