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If you think the new genetic information law doesn’t apply to you, think again.
When President Bush signed the Genetic Information Nondiscrimination Act (GINA) into law last May 21, the response from many employers and human resource managers seemed to be “We don’t do genetic testing, so this law won’t apply to us.”
The reality, however, may be different. “This law is much broader than just genetic testing,” says Christine Lyon, a partner in the employment and labor law practice of Morrison and Foerster in Palo Alto, Calif. “GINA could catch many employers unaware next year.”
For purposes of the law, genetic information encompasses not only the results of genetic testing but also information on illnesses obtained through family histories. “Asking about a person’s family medical history can be collecting genetic information and could potentially trip up a lot of businesses,” says Lawrence Lorber, a partner with the Washington, D.C., office of Proskauer Rose. “It’s not a problem to ask about personal medical history under this law, but if you ask about family history, then that could be problematic.”
Employment attorneys interviewed for this article agreed that GINA could be called the “stealth statute” since many employers haven’t paid attention to its passage and its requirements might sneak up on them. The law could have several far-reaching ramifications for employers when its employment provisions take effect in December 2009.
Thus, in the coming months, it will be crucial for HR professionals to become familiar with the law’s provisions and to take necessary steps—with hiring practices or recordkeeping—to make certain they don’t inadvertently violate it.
The statute goes beyond the health information privacy protections that employers routinely comply with under laws such as the Americans with Disabilities Act (ADA) and HIPAA—the Health Insurance Portability and Accountability Act. The genetic information law’s employment provisions, contained in Title II, apply to all employers. And according to Lyon, the provisions will prohibit employers from discriminating against individual employees or job candidates on the basis of genetic conditions or predisposition to certain diseases.
Since the majority of employers don’t actively collect genetic information on their employees or job applicants, they may assume the law does not apply to them. GINA’s employment provisions may look like a “statute in search of a problem,” says Lorber.
Nonetheless, in light of GINA’s express prohibition against using genetic information when making employment decisions, both Lorber and Lyon say employers need to be aware of the information they have collected on their employees and job applicants.
Moreover, the law’s prohibitions extend to information on people as distant from employees or applicants as their fourth-degree relatives, such as great-great-great grandparents. While the fourth-degree rule is not likely to affect employers, it does broaden the law’s scope and how it can be used in discrimination complaints, according to attorneys.
Reviewing the Past
For years, it has been common to ask about family health history when employees applied for employer-sponsored health care coverage. The information, which many employers may not realize they have on record, could be a time bomb once GINA takes effect.
“The information was probably collected for a good reason at the time, and employers have kept it in their records,” Lyon says. “This information could pose a problem now if an employee is fired, doesn’t receive a promotion or faces some disciplinary action.”
For example, if an employee decides legal action is necessary and during the process of evidence discovery finds that the employer has genetic information on record—like a family medical history—then those records could pose a serious problem.
“Even if the employer didn’t act on the information, just having it on file could raise questions about how and why this information was kept and used,” says Lorber.
Records and Exceptions
Both Lyon and Lorber recommend that employers review their employee recordkeeping and purge information such as family medical histories or anything that might be construed as genetic information.
Lorber says it’s good policy and procedure to review employment records periodically to ensure that they are kept up-to-date and current with any changes in the law. The passage of a measure such as GINA might be a good impetus to begin a review, he says.
Most human resource information systems “are sophisticated enough to search and locate information like family medical histories or conditions if that is in the system,” Lorber says. “It’s a good idea for employers to start looking at the information now before the employment title of GINA takes effect.”
The law will require employers to keep any genetic information on workers in separate and confidential medical files—similar to the current requirements under the ADA for disability-related records.
Employers that maintain medical records that comply with ADA regulations also will comply with the confidential medical file provisions of GINA, according to the law.
GINA does include an exemption that allows employers to collect genetic information for specific purposes such as part of an employer-sponsored wellness program. However, employers must first have signed waivers from plan participants on file. The exemption requires that the genetic information be provided only to the plan participants and licensed health care professionals or board-certified counselors involved in the wellness program.
The law also will allow employers to gather genetic information to verify that an employee can qualify for time off under the Family and Medical Leave Act (FMLA), as well as any state family and medical leave laws. However, the information can be applied only to leave granted under federal or state laws. If an employer happens to use the genetic information for a medical certification for employer-provided leave rather than FMLA leave, the employer could be in violation of GINA.
“This could be a provision of the law that might trip up some employers that are seeking medical certification for health-related leave,” says Lyon. “It will be very important for employers to take care and understand how the new law will apply under these circumstances.”
Factoring In State Laws
Another challenge facing employers is the wide range of state genetic-testing and discrimination laws. Thirty-four states and the District of Columbia have enacted some form of genetic information laws. The laws range from fairly broad and unrestrictive to statutes that severely limit the use of genetic information.
Many state laws prohibit health care plans from using genetic tests or information to determine if an employee qualifies for health insurance. Some of the laws also address employment discrimination. “The patchwork of state genetic information laws is something employers with multiple locations have been dealing with for several years,” Lorber says. “Just how the new federal statute works with the state laws will take some sorting out. But businesses need to understand how all these laws work and what effect the federal statute will have. It’s just as easy to be sued under state law.”
Also in Play: Health Benefits
Another major aspect of GINA, in Title I of the law, prohibits the use of genetic information to discriminate against participants in health care plans. The benefits aspect of the law also could prove “significant” for employers, according to Ashley Gillihan, an attorney in the employment benefits practice in the Atlanta office of Alston & Bird LLP. “The law will definitely have an impact on the way employers and health plan providers conduct health risk assessments,” he says.
With the law’s prohibition on using genetic information, including family health histories, Gillihan says, one step of traditional health risk assessments effectively has been removed. He recommends that businesses look at the questions they—or their health plan providers—ask employees when determining eligibility for health coverage.
The health coverage provisions of GINA are set to take effect in January 2010 for calendar-year plans, but Gillihan says employers should soon start reviewing their health plans and working with third-party administrators on the law’s provisions. “Have some idea in advance where your organization stands now and what is needed to ensure compliance with the law,” he says.
Regulations To Come
Both the U.S. Equal Employment Opportunity Commission (EEOC) and the U.S. Department of Labor have until next May to issue proposed regulations for enforcing GINA. While officials in both agencies are most likely working on drafting the proposals, the new administration could slow down the process, according to Lorber.
Members of the new administration “will be eager to make their mark and set their own agenda, so any regulation proposals starting under the Bush administration will most likely be scrutinized very carefully,” Lorber says. “It will also take time for the new administration to fill the appointed and policy positions in the Labor Department, and there could be some changes at the EEOC, too, so it’s far from certain that the regulations will be released by the May deadline.”
Lorber and others say HR professionals should make sure they stay informed of the regulation proposals and revisions as they happen. “It’s in the best interest of HR professionals to pay attention to this because it will certainly affect the way they do their jobs,” Lorber says.
The author is senior writer for HR Magazine.
Genetic Information in the Workplace: What the New Law Demands
Experts: Penalizing Overweight Workers Is Risky (SHRM Online Workplace Law Focus Area)
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