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Genetic Shake-Up

You must make the Genetic Information Nondiscrimination Act part of your company's DNA.

July 3, 2011
Related Topics: Technology and the Law, Miscellaneous Legal Issues, Medical Benefits Law, Benefits, Technology

In the spring of 2004, a Connecticut woman got tested at the Yale Cancer Center in New Haven to see if she carried BRCA2, a gene associated with an elevated risk of breast cancer. It turned out that Pamela Fink, then 33, was indeed a carrier of the gene, as were her two sisters.

Fink went on with her life, landing a job as director of public relations and marketing at MXenergy, a natural gas and electricity supplier in Stamford. But a few years later, after both her sisters had been diagnosed with breast cancer, Fink decided to protect herself by undergoing a double mastectomy.

In August 2009, she informed her employer of her genetic testing and her upcoming surgery. Then in March 2010, not long after she'd returned from medical leave, she was fired. MXenergy did not respond to a request for a comment.

Fink says she was not aware that just four months earlier, a law had gone into effect that prohibited companies from making employment decisions based on genetic information. It was her lawyer who told Fink about the Genetic Information Nondiscrimination Act, or GINA. And then he promptly filed one of the first GINA claims with the U.S. Equal Employment Opportunity Commission in the nation, and one that is widely regarded as probably the first true, clear-cut claim under the new law.

Under GINA, employees, candidates and/or the EEOC may bring discrimination claims against employers and seek compensatory and punitive damages. The cap on combined losses (excluding past monetary losses) ranges from $50,000 for employers with 15 to 100 employees to $300,000 for employers with more than 500 employees.

Although about 200 claims were filed with the EEOC in GINA's first fiscal year, most of those overlapped with already existing laws, particularly the Americans with Disabilities Act, or ADA. But the Fink case was a textbook illustration of what GINA aims to prevent: discriminatory health insurance or employment decisions made in the light of acquired genetic information.

Fink's lawyer, Gary Phelan, who is special counsel at Cohen and Wolf in Westport, Connecticut, says he's prohibited from discussing how the case was resolved, but he is clearly a fan of GINA. "There was a real need for this law," Phelan says. "I really applaud the EEOC for, I think, doing an outstanding job in making a priority of passing this legislation and now drafting pretty comprehensive regulations."

But other lawyers, particularly those who represent employers who are wrestling with the tortuous ins and outs of those regulations, are not so sanguine. Marti Cardi, an employment lawyer who is chief compliance officer with Reed Group, a Westminster, Colorado-based leave of absence and disability management firm, doesn't try to mask her irritation with the complexities of the new law. Asked what kind of reception her clients have given GINA, Cardi responds, "Total disbelief; aggravation; 'What problem is this supposed to solve?'; 'Why are they doing this to us?'; 'Genetic information means what?' "

GINA was signed into law May 21, 2008, by then-President George W. Bush. It became effective Nov. 21, 2009. Title I of GINA addresses the use of genetic information by health insurance providers; Title II covers employment issues and is enforced by the EEOC for state and federal government agencies and companies with 15 or more employees. Final regulations clarifying certain aspects of Title II were issued by the EEOC on Nov. 9, 2010, and went into effect Jan. 10, 2011.

Passing the law creating GINA took almost as long as the mapping of the human genome, a scientific feat that spawned a new "genomics" industry and changed the nature of health care, while raising heretofore unrecognized privacy issues.

The Human Genome Project completed its work in 2003 after 13 years; GINA was passed in 2008 after more than 12 years of development and negotiation. Recognizing that genetic science would surely explode after the genome was mapped, Congress acted to ensure that biomedical research could make advances benefiting humankind, while individuals would not suffer health insurance or job discrimination based on their newly discovered genetic information.

The EEOC says it was planning for the future, but based on numerous interviews with employers and employment lawyers, it will be far in the future before most people in the workplace achieve an understanding, let alone an awareness of this law. Several corporate spokespeople asked to comment on GINA for this article, responded either that they had never heard of it or that they believed the law did not apply to their industry.

For example, a communications manager for Intel Corp. responded that GINA "hasn't really been an issue for us." At Portland, Oregon-based Standard Insurance Co., executives reported that they had not "run across any experiences in the workplace where they've had to work with this act." Standard Insurance's benefits director further stated that as a life and disability insurer, as opposed to a health insurer, the company was not affected by GINA. At IBM Corp., the first major corporation to institute its own genetic privacy policy, a communications manager scrambled for three weeks to find someone to answer questions about GINA's impact on the workplace—with no success.

Earth to workplace: The future is now. It's high time employers learned about GINA. It's complicated. GINA protects employees and candidates from having genetic information about themselves and family members used against them in employment decisions. And if workers do file claims against employers, GINA also protects them against retaliation or harassment.

While discrimination based on existing conditions falls under the ADA, GINA is concerned with discrimination based on conditions that could possibly manifest in the future.

All in the family

Even the simplest of terms, such as "family member," requires careful study. Family members under GINA include several branches and limbs of one's family tree, counting relatives to the fourth degree (i.e., great-great grandparents and great-great grandchildren), first cousins once removed, and some people who are not even blood kin, such as spouses and adopted children.

Notes Denver lawyer Philip Gordon of the law firm Littler Mendelson in an online article about GINA: "The fact that an employee's adopted child has the chicken pox, father was deaf, grandmother died of breast cancer or great-great grandfather died of gangrene after being shot in the Spanish-American War constitutes genetic information under GINA and the EEOC's implementing regulations."

As for the term "genetic information," that's also more complicated than it appears. If it were defined in terms as simple as the results of an employee's personal genetic testing or the results of an employee's amniocentesis test on her unborn child, that would make sifting through the regulations less complicated. However, the law states that genetic information includes health information for the individual and for those various limbs of the family tree. And that translates to mean family medical histories.

"There might be a little disconnect between what people think of as genetic information and what the statute actually defines as genetic information," says Kerry Leibig, acting assistant legal counsel for the EEOC's Office of Legal Counsel. "I can see that that can lead to confusion."

The fact is that employers can no longer request family histories in fitness-for-duty examinations and the like. And they are required to take steps to prevent any genetic information about the employee or employee's family members from coming into their possession, with the exception of information for Family and Medical Leave Act, or FMLA, certification to care for a family member.

If family genetic information were collected from an employee or former employee before the law went into effect, it must be segregated from personnel records, kept in separate medical files and treated with confidentiality.

To make sure that any unintentional acquisition of genetic information is considered "inadvertent" and thus not a violation of the law, employers must make liberal use of the "safe harbor" language suggested in the GINA regulations. Although EEOC lawyers say that the safe harbor language isn't necessary for FMLA forms requesting leave to care for a family member, some employers and employment lawyers believe one can't be too careful.

"Employers need to put the safe harbor language on all their requests for medical information of any kind," Reed Group's Cardi says. "I advocate putting it even on the FMLA certification for the family member, even though that's exempted, because you might get more than you need. So I put it on with a little added language that says something like, 'Don't give me genetic information unless it's necessary to support the request for leave.' "

Philadelphia lawyer Debra Steiner Friedman of Cozen O'Connor agrees that, "It's better to be safe than sorry. You can't go wrong to add the language. And I think a lot of employers, when they're asking for medical information relating to a request for accommodation from an employee under the ADA, really should be including the GINA safe harbor wording. It's just another area where I don't think a lot of employers yet realize that they really should do that or they're at risk."

Another problem, as Cardi sees it, is that even with safe harbor language planted on all pertinent documents, some genetic information can get through. Although the law sees this acquisition as inadvertent, it opens up a Pandora's box.

"Once you have it, then all of a sudden you may be subject to a discrimination claim," says Cardi, citing a hypothetical situation in which an employer could be accused of misusing information that was inadvertently obtained. "It just opens up all kinds of additional risks for the employer."

Craig Kephart, president and CEO of Centric Health Resources, a 100-employee specialty pharmacy in Chesterfield, Missouri, is in a completely different situation. He actually seeks out people with genetic disorders to hire as peer health coaches for clients of the Missouri company, which caters to people with rare diseases. GINA comes into play, he says, only when genetic information is used in adverse employment situations, not in actually giving a person a job.

Kephart believes not only that GINA is fair to employers but also that it is a boon to humanity, since it allows people to be more proactive about their personal health and to contribute to general scientific knowledge, all without fear of discrimination. "I've struggled to understand why people struggle with it," he says.

The EEOC tried to cover all circumstances under which employers might accidentally acquire an employee's genetic information. Thus, for the first time, the EEOC drafted regulations with social media in mind. That means Facebook, LinkedIn, Twitter and blogs that both supervisors and subordinates may read and post comments.

"The bottom line is," says Chris D'Angelo, a lawyer with New York City-based Vandenberg & Feliu, "once a supervisor and a subordinate are friends on Facebook or Myspace or connected on LinkedIn, or participate on the same blog or are connected in some way in social media, if the supervisor even inadvertently obtains genetic information, while the acquisition may not in and of itself be a violation of the act, you can't put the genie back in the bottle."

D'Angelo, who has become an expert on the legal implications of social media, adds, "If that employee is subsequently disciplined or discharged in some fashion, it may open the door to claims that the employer used the acquisition of that genetic information to make employment-related decisions about that individual."

That deafening click-click-click noise you just heard? It was several hundred thousand bosses unfriending their employees on Facebook.

No joke, according to D'Angelo. "There are a number of employers who are contemplating having a rule that would bar their managers and supervisors from friending or accepting friend requests from subordinates because it could lead to the acquisition of this type of information. For employers, it's a snake pit out there. It was bad enough when we were just dealing with email."

Not a drop to drink up

GINA even enters the area of water cooler conversations. If an employee mentions a family health situation—for example, that his father is recuperating from a heart attack—the supervisor should quickly bow out of the conversation. The law suggests acceptable responses to such information. The supervisor can say something like, "I hope he's feeling better soon," but to carry on the conversation could be construed as probing. Better to turn on your heel and leave.

"The EEOC advised people that they can say, 'I'm sorry to hear that. I hope everything's going to be OK. But I'm afraid I can't discuss it with you because federal law prohibits that,' " Carti says. "Now that gets you all warm and fuzzy, doesn't it?"

Such situations can cause discomfort. "That's where you're finding some of the anxiety," says Tanya Clark Robinson, head of Employee Relations and HR Policy & Compliance at Hartford, Connecticut-based Aetna Inc. "Maybe we don't have a heightened anxiety, but certainly a heightened sensitivity to what used to be seen as sort of general polite inquiry."

GINA affects company wellness programs, too. Although it has become customary to offer employees financial incentives to complete health risk assessments, the carrot can no longer be dangled for questions related to genetic information. If people do offer genetic information to health care professionals, it must be fully voluntary, with written authorization from the employee.

"What they can do instead," Leibig says, "is still do the 100-question survey, and still offer incentives, as long as it's clear that the person doesn't have to provide genetic information. They can say, 'Here's a 100-question survey. Questions one through 20 pertain to your family medical history. You do not have to answer these questions to qualify for the $150.' You can't give financial incentives for the genetic information, but you can for the others."

Needless to say, answers to survey questions regarding family history stay with the health care professional administering the wellness program. The employer gets only aggregate information, Leibig says. For example, the employer might ultimately be informed that of 30 employees who took the survey, 10 percent had a family history of diabetes.

Such limitations on information are frustrating for companies trying to cut health care costs by addressing employees' disease risks. Says Rhonda Piar MacAndrew, senior vice president of human relations for Greyhound Lines Inc. in Dallas, "You can't ask specific questions that are going to give you information about what you need to be focused on for disease management."

MacAndrew says Greyhound has been offering discounts on employee health care rates for filling out an online survey. But now, collecting information that is vital to educating and motivating employees who are at risk is not so easy. "And that's the twist that employers should be looking at," she says.

Company medical personnel, or doctors and nurses who are contracted by the company, are prohibited from collecting genetic information from employees during job-related examinations or supplying employers with genetic information that was previously collected. The law is tough on how to deal with a doctor who keeps forgetting to redact genetic information before sending a file over to the employer. GINA advises the employer to discontinue working with that health care provider.

Two years before GINA was signed into law, Aetna already had a system in place that overrides this thorny problem. As the first health plan to develop a privacy policy for genetic data and to adopt its own genetic nondiscrimination policy, Aetna had long since put all medical matters in the hands of a third party, usually a nurse practitioner. An employee's manager is informed of determinations regarding FMLA and ADA requests and accommodations, but never learns the medical details. "The manager is completely shielded from that," Robinson says.

GINA may sound like a headache now, but employers must consider the future. "As more genetic information is known," says Cozen O'Connor's Friedman, "those employers who aren't aware of the law and its requirements may unwittingly violate it because there will be so much more information available."

GINA claims are expected to become more on target as acquiring personal genetic information becomes cheaper, easier and more commonplace for the average consumer, and as court rulings better define the law. But for now, according to the EEOC, about three-quarters of the GINA claims filed to date have overlapped with ADA claims.

"I predict that GINA claims will be most prevalent as 'afterthoughts' to suits alleging violations of the Americans with Disabilities Act or the Family and Medical Leave Act," says Robin Shea, a GINA expert who is a partner in the Winston-Salem, North Carolina, office of the law firm of Constangy, Brooks & Smith. "Because of the breadth of the family history definition, I expect that this portion of the GINA is, and will continue to be, violated on a regular basis, making it easy for plaintiffs to add 'afterthought' GINA claims."

Weston, Florida, lawyer Scott Behren described the several claims he has filed for clients as "borderline ADA." One was for a woman who was fired after taking time off to adopt a child. The basis for the claim was that her infertility was a genetic condition. Another was a woman who felt she was fired because of her obesity, which was possibly inherited. "I'm not sure where that's going to go," Behren says, "but I thought it might be an angle." Both claims are still pending.

Workforce Management, July 2011, pgs. 16-18, 20-21 -- Subscribe Now!

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