Do I have to reveal genetic information for my employer's wellness program?

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Question:

My company just started a wellness program that includes genetic screening. There are financial incentives for employees to participate, so I'd like to join up. However, heart disease and high cholesterol run in my family; I take medication to control my cholesterol, and my doctor monitors my heart health fairly closely. I'm worried that my employer might use this information against me when making decisions about promotions or layoffs. Is there anything I can do to avoid this? 

Answer:

There are two legal protections that should prevent your employer from learning this information in the first place. And, even if your employer somehow figures out your hereditary condition, it is prohibited from using that information in making decisions. 

The Genetic Information Nondiscrimination Act (GINA) makes it illegal for employers to gather or use genetic information in making job decisions. It also requires employer to maintain the confidentiality of any genetic information they might acquire legally. No matter how an employer learns about an employee's genetic profile, it may not use that information. 

GINA includes a handful of exceptions to the ban on acquiring genetic information. These exceptions recognize that an employer might come upon this information accidentally, in the course of fulfilling other legal duties, providing employee benefits, or normal conversation. For example, an employee might confide in his manager that he's recently learned that he carries a higher risk of contracting early-onset Alzheimer's disease, or an employee might circulate a fundraising email identifying herself as a carrier of sickle cell anemia. 

Wellness programs are another exception to the general prohibition against employers gathering genetic information. However, this exception is quite detailed, and it includes a couple of protections for employees. First, providing genetic information must be voluntary, and employees must agree, in writing, to provide it. An employer that offers financial inducements to participate in the program (like yours) must make clear that the money will be paid whether or not the employee provides genetic information. 

Second, only the employee or the employee's family member(s) receiving services (along with the counselor or health care provider affiliated with the program) may receive individually identifiable information about the results of any genetic screening. This information may not be disclosed to the employer except in aggregate terms that don't reveal the identities of individual participants in the program. And, even if the employer somehow figures out that you carry certain hereditary traits or genetic predispositions, it still cannot use that information in making decisions. 

The bottom line is that you have two choices, if you wish to participate in the program: You can refuse to provide genetic information or participate in the genetic screening component of the program, or you can participate knowing that your employer won't receive information that identifies you -- and can't act on such information, regardless. Either way, you're entitled to the money your employer offers for participation. 

 

 

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