Category Personnel/Employment
Title The Story of GINA, or Who Knew Genetic Information Could Cause So Much Trouble?
Preview The Storey of GINA, or Who Knew Genetic Infomation Could Cause So Much Trouble?

The Story of GINA, or
Who Knew Genetic Information Could Cause So Much Trouble?
Theresa Lynn Sidebotham, Esq.

About seven years ago, in 2008, a sweet little statute named GINA was born-the Genetic Information Nondiscrimination Act. Generally, Title II of GINA says that employers should not acquire genetic information about employees or discriminate against them on that basis. It prohibits employers from requesting, requiring, purchasing, or disclosing genetic information. As no one wants their genetic information used against them, the law sounds fairly uncontroversial. 

Who must comply with GINA? All employers with 15 or more employees, and some other entities. For information and examples about exactly how GINA applies, see   

For a few years, GINA just slept quietly. Then the EEOC got to work. Its first GINA case was against Fabricut, and was settled for $50,000. The sin of Fabricut, as related to GINA, was to ask for a potential employee's family medical history-like heart disease, diabetes, and arthritis. The EEOC's first class action lawsuit was against Founders Pavilion, Inc., and also alleged, as related to GINA, that the company asked for family medical history. The case settled for $370,000. So these cases establish pretty firmly that the EEOC considers family medical history to be genetic information and employers should not ask for it as related to hiring.

Employers may still require a preemployment medical examination after making a job offer, or require other relevant examinations that are job-related and consistent with business necessity, such as a furlough medical examination for missionaries. But the employer should tell health care providers not to collect information about family medical history, to comply with the EEOC's position. For those people who think a medical examination is probably pretty useless without family history, the statute appears to permit gathering the information if it is kept between the employee and the doctor, but that has not been tested in court. Employers should also warn employees not to provide family medical history information. Acquiring genetic information may be permissible in other, limited circumstances, such as Family Medical Leave Act (FMLA) requests.  

That is all a bit complicated. How should the employer handle it? In two words, "safe harbor." The final rule interpreting GINA proposes some "magic language," which the EEOC has adopted as well (see the link above).

The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits employers and other entities covered by GINA Title II from requesting or requiring genetic information of an individual or family member of the individual, except as specifically allowed by this law. To comply with this law, we are asking that you not provide any genetic information when responding to this request for medical information. "Genetic information," as defined by GINA, includes an individual's family medical history, the results of an individual's or family member's genetic tests, the fact that an individual or an individual's family member sought or received genetic services, and genetic information of a fetus carried by an individual or an individual's family member or an embryo lawfully held by an individual or family member receiving assistive reproductive services.  

If employers give the "safe harbor" language to both the employee and the health care provider, any disclosure of genetic information will be considered inadvertent, and there is no automatic violation of GINA. Does it have to be in writing? No, it can be oral, but then you will not be able to prove that you provided it. Give it in writing, and on every possible occasion: the post-offer medical examination; any other relevant (job-related, consistent with business necessity) medical examination; when you are requiring certification for an employee who needs leave under FMLA; for diagnosis or treatment for a workers' compensation injury; before discussing Americans with Disabilities Act (ADA) accommodations; before discussing disability benefits; and for drug testing. Then everyone can ignore it the way they ignore the Health Insurance Portability and Accountability Act (HIPAA) notifications, but the employer will be in safe harbor.  

What about workplace-related counseling programs? For instance, some mental issues, like bipolar disorder, run in families and may have a genetic component. GINA only applies to the employer. So what an employee discusses with a counselor, and what the counselor asks the patient, will be protected under client-psychologist confidentiality, and will not be disclosed to the employer.  

If the employee wants to ask for an ADA accommodation or FMLA leave, the employee can voluntarily disclose information about a problem that may have a genetic component. Just receiving that information is not considered a violation of GINA for the employer, especially if it has delivered the "safe harbor" language. (Of course, taking negative action against an employee on the basis of a genetic-related disability would give another basis for a discrimination charge, because GINA does not permit retaliation.)  

Another potential issue with GINA for employers is social media posting and the sharing of prayer requests, or even just workplace gossip. Such information may get shared by Facebook, Twitter, and e-mail, just for starters.  

Sometimes people put their own information (genetic or otherwise) out there. Sometimes people ask for prayer for others' illnesses and disabilities. Once it is out there, the information can continue to spread. There may be First Amendment protection for sharing prayer requests, but it's wiser for an employer not to test that.  

If all this (possibly indiscreet) sharing is purely private and off work time, it may not have much to do with the employer. If an employer acquires genetic information inadvertently, for instance when it shows up in her Facebook feed, that is not a violation. Employers just have to be careful not to appear to pry for more information. "I'm sorry your mom has cancer" is fine. "How many people in your family have had cancer, anyway?" is not fine.  

What if the employer is facilitating the inappropriate sharing, intentionally or accidentally? This could implicate not only GINA, but HIPAA confidentiality. If the employer is involved in social media, it will need to be careful. If Jennifer asks for prayer on the school prayer page because of her diabetes or breast cancer, that is fine, but other personnel should not share it on her behalf.

The employer may need to train employees, especially supervisors, about how to handle sharing of personal information either at work or otherwise. It should definitely make sure that all medical information is kept confidentially according to HIPAA guidelines. Employers can also evaluate the level of their involvement in social media with their employees. For instance, this is one good reason not to "friend" employees. At the very least, the employer should not initiate such connections. Beyond that, a work culture of keeping personally shared information confidential, and treating disclosures in a kind and caring way, will go far.   

Theresa Lynne Sidebotham serves ministries and schools on a variety of issues, including child protection and religious liberties. She understands ministry and missions from the inside, since she was an MK in West Java and served for seven years in Sumatra with her husband and four sons. Theresa assisted appellate judges for several years; then she worked at a large law firm in their religious organizations practice before founding Telios Law PLLC.    

LLU 25.1   

Notice: This article is designed to provide accurate and authoritative information in regard to the subject matter covered. It has been provided to member schools with the understanding that ACSI is not engaged in rendering legal, accounting, tax, or other professional services. If legal advice or other expert assistance is required, the services of a competent professional should be sought. Laws vary by jurisdiction, and the specific application of laws to particular facts requires the advice of an attorney.  

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