The federal Genetic Information Nondiscrimination Act (GINA) of 2008 was founded on the concern that advancements in the field of genetics and the decoding of the human genome could lead to the misuse of genetic information to discriminate against individuals in health insurance and employment. Title II of GINA regulates the acquisition and use of genetic information in the employment context and applies to employers with 15 or more employees for each working day in each of the 20 or more calendar weeks in the current or preceding calendar year. On November 9, 2010, the EEOC published its final regulations implementing Title II of GINA, which are scheduled to take effect on January 10, 2011.
Under the new regulations, "genetic information" includes information about an individual or his or her family members' genetic tests, "family medical history," requests for or receipt of genetic services, and the genetic information of a fetus or embryo of an individual or an individual's family member. Genetic information does not include an employee's own medical history or current condition. It also does not include age or gender.
The definition of "family" is also very broad, encompassing everyone from great-great-grandchildren to great-great-grandparents and also including people who are not related by blood, such as spouses and adopted children.
In the employment context, GINA prohibits: (1) discriminating on the basis of genetic information; (2) requesting, requiring, or purchasing genetic information, with limited exceptions; (3) disclosing genetic information, with limited exceptions; (4) harassment based on genetic information; (5) retaliation; (6) limiting, segregating, or classifying individuals on the basis of genetic information; and (7) causing a "covered entity" (i.e., employment agencies, unions, or training programs) to discriminate on the basis of genetic information.
Employer's Misuse of Genetic Information Prohibited
With regard to GINA's prohibitions against discrimination, harassment, and retaliation, GINA mirrors Title VII. There are no exceptions—you simply cannot discriminate, harass, or retaliate against an employee based on the employee's genetic information, participation in a GINA-related investigation, or complaint of a GINA violation. It does not matter how, when, or why you obtain the genetic information. In addition to Title VII-like prohibitions, employers are also prohibited from limiting, segregating, or classifying individuals on the basis of genetic information.
Prohibition Against Acquiring Genetic Information
GINA prohibits employers from requesting, requiring, or purchasing the genetic information of an employee or an employee's family member. Requesting information includes inquiries or actions that are likely to reveal genetic information—including internet searches. However, GINA's prohibitions only apply to information acquired in an "employment context," not to information acquired while individuals are accessing sources for personal reasons. Still, employers should not be searching for their employees' genetic information at anytime, regardless of whether it is technically in an "employment context."
The final regulations contain exceptions to this general prohibition, several of which are highlighted below. These exceptions largely address information that is acquired inadvertently. For these "inadvertence exceptions," any genetic information that is acquired by someone who has the intent to discover genetic information, or who should know that their conduct will lead to the discovery of genetic information, will not be protected by these exceptions. Because intent plays a major role under the new GINA regulations, these cases are likely to be fact-intensive.
Requests for Medical Information
Under the final regulations, employers who inadvertently acquire genetic information pursuant to lawful requests for medical information will not violate Title II if they direct the health care provider not to provide genetic information. To assist employers in meeting this exception, the final regulations offer specific language for employers to use with their requests for medical information in demonstrating that the acquisition of genetic information was inadvertent:
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.
An employer's failure to use this "safe harbor" language will not automatically prevent it from establishing that the receipt of genetic information was inadvertent (for example, when an employer's request for medical information was specifically tailored but the health care provider's response was overly broad). However, this language should be included in every request for medical information you make. It should be bold and prominent—not in fine print. The United States Department of Labor may issue new FMLA forms that contain this language eventually, but for now you should add this "safe harbor" language to your forms and packets yourself.
Employers are still allowed to request family medical history when seeking medical certification under FMLA (or state law equivalents) if the employee is taking leave to care for that family member. In this circumstance, the receipt of family medical history is allowed, although not inadvertent, because of the lawful requirement for its acquisition. This exception also applies to employers not covered by FMLA but who voluntarily provide leave to care for ill family member, as long as the documentation policy is applied even-handedly. However, if it is the employee who is ill, the FMLA certification should contain the safe harbor language, and no genetic information should be collected.
The "Water Cooler Exception"
The final regulations also outline the "water cooler exception." In enacting GINA, Congress was concerned that casual conversation between co-workers regarding health could unnecessarily lead to federal litigation. To this end, the final regulations confirm that an employer will not violate Title II when a manager or supervisor accidentally overhears a conversation about genetic information between an employee and others. Likewise, if a supervisor learns of genetic information in casual conversation directly with an employee or a third party, the employer will not violate Title II. The final regulations warn, however, that if the manager probes further, asking questions of the employee that are likely to result in the acquisition of genetic information, the inadvertent acquisition exception will no longer apply. For example, if an employee tells you that her mother was just diagnosed with cancer, you may share your sympathies but should not ask additional questions (i.e., "Does it run in your family?" or "Did they catch it early?"). In light of this requirement, it is a good idea to train all supervisors and employees on GINA, so that employees understand that the employer still cares about its employees' well-being, but that the employer is limited in how it may respond to certain news of employees' family situations.
GINA and Social Media
With the social media explosion, many commentators were concerned about GINA liability based on managers learning genetic information about individuals from social networking sites. The final regulations confirm that an employer will not be liable under Title II when a manager or supervisor inadvertently learns of genetic information from a social media platform to which he or she was given access by the creator of the profile. However, supervisors should be careful that any "friend" requests come from the subordinate to the superior—not the other way around. Also, employers need to remember that GINA focuses on intent. So even if an employee gives you access to the employee's page, you should not use that access to go looking for genetic information. Further, you should never "friend" an employee's family member—it would be too likely that you would learn of familial health issues.
Voluntary Wellness Programs
Many employers offer wellness programs to employees which are designed to enhance the health of employees. The acquisition of genetic information pursuant to a voluntary wellness program will not violate Title II if: (a) genetic information is provided voluntarily by the individual; (b) the individual provides prior knowing, voluntary, and written authorization; and (c) individually identifiable genetic information is provided only to the individual or qualified health personnel, as applicable, and not to the employer. Note that both participation in the wellness program and the provision of genetic information must be voluntary, meaning there can be no adverse actions taken against employees who choose not to participate. Furthermore, although an employer may not offer a financial inducement to employees to provide genetic information, it may offer such inducements for health risk assessments that include questions about family medical history, so long as the employer makes clear that the inducement is available, irrespective of whether the questions about family medical history are answered. This means that health risk assessments and other wellness program forms must now have a disclaimer on them, preferably right before the "family history" section, stating that eligibility for the incentive is not dependent on the provision of genetic information, such as family medical history or genetic tests.
Publicly Available Information
Employers who accidentally acquire genetic information from a publicly available source have not violated GINA. For example, reading a local news article that reveals that an employee's family member has (or had) cancer is permissible, so long as the employer did not go searching for an article on that employee's family medical history. This exception does not apply to information contained in medical databases, sources with restricted access (which require permission of an individual or membership in a group), or court records. This exception also does not apply if you intend to access genetic information.
Medical Examinations Relating to Employment
The final rule makes clear that the prohibition against acquiring family medical history applies to medical examinations related to employment. Thus, employers are required to specifically advise health care providers not to collect genetic information, including family medical history, as part of a medical examination intended to determine the individual's ability to perform a job. As a result, employer forms used in requesting medical information should expressly advise health care providers that genetic information is not requested by the employer and should not be requested by the physician either.
Disclosure of Genetic Information
Employers must treat genetic information confidentially—the same as all other employee medical information. If you are in possession of an employee's genetic information collected prior to November 21, 2009, you are not required to purge those files, but they should be segregated. Any genetic information should be kept in a separate file, along with all other medical information.
There are a few scenarios in which disclosure of genetic information is permissible:
- In response to a written request made by the employee
- To an occupational health researcher
- Upon court order, with notice to employee—not subpoenas or discovery requests
- To government officials investigating GINA compliance (EEOC)
- In accordance with the FMLA or similar state/local law To a public health agency regarding contagious disease that presents imminent hazard of death or life-threatening illness
Employers must always be careful when producing personnel files to third parties that all genetic information is removed. Additionally, even when disclosing pursuant to an exception, be careful to produce only exactly what is sought.
Practical Implications for Employers
As with Title VII, violations of Title II of GINA may be costly. GINA provides employees the right to file civil actions based upon intentional discrimination, harassment, or retaliation by employers, among other GINA violations. However, unlike Title VII, GINA does not provide a private cause of action for disparate impact claims. Remedies for GINA violations include compensatory and punitive damages, reasonable attorneys' (and expert) fees, and injunctive relief (e.g., reinstatement, hiring, and back pay). As a result, employers should take proactive steps to avoid GINA liability. Recommended steps include:
- Adding genetic information as a protected characteristic listed in your non-discrimination statement and policies
- Posting the new EEOC poster which was issued in November 2009
- Separating medical documents from personnel files
- Adding safe harbor language to medical certification forms
- Instructing physicians who perform employment-related exams not to collect genetic information (including family history)
- Reviewing wellness programs, forms, incentives, and procedures
- Training supervisors and employees regarding GINA