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Passed in 2008, the Genetic Information Nondiscrimination Act (or GINA, at 42 U.S.C. § 200 and following) is broadly meant to prohibit employers from using an applicant's or employee's genetic information as the basis for making employment decisions, setting premiums for group health insurance, or providing other privileges of employment. GINA also requires employers to refrain from asking employees to provide genetic information and to keep confidential any genetic information that they happen to acquire.
Why does GINA matter for a workplace wellness program? Federal regulations adopted in late 2010 addressed this question directly. For starters, the employer might be asking employees for genetic information under certain circumstances, such as in the health risk assessments (HRAs) that employers typically administer (through a third party) when designing and launching their program. Also, it turns out that the genetic information that an employer should be careful when asking about includes more topics than one might imagine. Under the interpretation of the various federal agencies involved, employers need to avoid not only asking about the obvious, like a person's results from genetic testing, but about the person's family health history.
If, for example, you're an employer, and the HRA you commission contains common questions like, "Does your family have any history of cancer, heart disease, or other illness?" or even "Are there any other health matters that you would like to discuss?" you could end up in violation of GINA.
Fortunately, the regulations carved out exceptions specifically directed at voluntary wellness programs. Employers can avoid trouble with GINA by ensuring that all of the following are true:
If employees are asked to provide any genetic information, they do so only voluntarily. That means theyre not required to provide the information nor penalized if they dont provide it. But what if the employer offers financial incentives to employees who provide such information (perhaps as part of the general incentive offered for taking an HRA)? The regulations anticipated that issue. The employer cant directly offer a financial inducement for people to provide genetic information. But it may offer financial inducements for completion of HRAs that include questions about family medical history or other genetic information, so long as its made clear, in language the employees are reasonably likely to understand, that the inducement will be made available whether or not the employee answers the questions regarding genetic information. In fact, the employees themselves shouldnt have to figure out which questions relate to genetic information -- the questions at issue should be pointed out to them.
When offering programs that promote healthy lifestyles or help meet particular health goals, the employer doesnt single out for participation, by offering financial inducements to, employees who have (voluntarily, of course) provided genetic information that indicates theyre at higher risk of acquiring a health condition in the future. Any such programs must also be offered to people whose current health conditions or lifestyle choices put them at heightened risk of developing the condition. Heres an example straight from the regs:
Employees who voluntarily disclose a family medical history of diabetes, heart disease, or high blood pressure on a health risk assessment . . . and employees who have a current diagnosis of one or more of these conditions are offered $150 to participate in a wellness program designed to encourage weight loss and a healthy lifestyle. This does not violate Title II of GINA.
In any employer-sponsored efforts to elicit health information that might include genetic information, the employer must get the employees prior authorization. Whats more, this must be a knowing, voluntary, and written authorization, using an authorization form written so the employee is likely to understand it. The form must describe the type of genetic information that will be obtained and the purposes for which it will be used as well as the restrictions on disclosure of genetic information. This authorization may be electronic.
Any individually identifiable genetic information that comes out in the course of the workplace wellness program must be accessible only by the employee or family member receiving services, or to any health care professional or board-certified genetic counselor involved in providing the services. Such information may not be accessible to managers, supervisors, others who make employment decisions, or anyone else in the workplace.
Any individually identifiable genetic information resulting from the wellness program services must be available only for purposes of those services and not disclosed to the employer except in aggregate terms that dont reveal anyones identity. (Fortunately, this is already typical of how HRAs are administered, with a third party giving out the questionnaires, then creating a summary of the health information for the employer.) Even a summary report has its dangers, however. For example, what if the HRA report comes back saying that 25% of your employees are at high risk of prostate cancer due to family history, and it so happens that only one out of four of your employees is male? Dont panic. The regs say that employers are not in violation of GINA if they receive aggregate information that, for reasons outside of the employers control or the control of the information provider, makes the genetic information of a particular person readily identifiable with no effort on the employers part.
As you can see, administering HRAs is the most likely context in which an employer might run afoul of GINA. Employers should, therefore, talk to their HRA vendor about how and whether it has adapted its HRAs to comply with GINA.