The Genetic Information Nondiscrimination Act of 2008 (“GINA”) prohibits employers with 15 or more employees from requesting, requiring, or purchasing genetic information about applicants and employees.  The law strictly limits the disclosure of genetic information.  However, as written, the law contains many gaps and raised a number of questions.

The Equal Employment Opportunity Commission (“EEOC”) recently issued regulations governing how GINA will be implemented.  The regulations were designed to address areas of uncertainty that have troubled employers since the enactment of GINA, although they still leave some practical questions unanswered.

Basic Provisions of GINA

GINA regulates how an employer handles “genetic information.”  Genetic information is defined as: (a) information about the genetic tests of an employee or an employee’s family member; (b) the manifestation of a disease or disorder in the employee’s family members (otherwise known as “family medical history”); and (c) genetic information about a fetus carried by the employee or family member (or embryo legally held by the employee or family member through assisted reproductive technology).

Generally, GINA prohibits employers from engaging in three types of conduct.  First, covered employers may not discriminate against employees or applicants on the basis of genetic information.

Second, covered employers may not request, require, or purchase genetic information about employees, except in very limited circumstances.

Third, covered employers are prohibited from retaliating against an employee who has opposed a practice made unlawful by GINA.  Thus, employees who file a charge, testify, or participate in an investigation, proceeding, or hearing under GINA are protected from retaliation.

The law also regulates what employers may do with genetic information they have in their possession. Specifically, employers who receive genetic information may not disclose it except in very limited circumstances.

GINA also requires that any genetic information an employer obtains must be protected as a confidential medical record. If the information is in writing, it must be kept in medical files that are separate from personnel files.

The New Regulations

The EEOC’s regulations add meat to the bones of the statue.  As described below, the EEOC has provided some valuable guidance to employers.

            GINA Prohibits Harassment Based on Genetic Information

GINA itself does not discuss whether harassment is prohibited.  However, the EEOC’s preamble to the final regulations states that, because Congress used the same language in GINA that it used in Title VII, the EEOC interprets GINA to prohibit harassment based on genetic information.

            The Definition of a “Manifested Disease”

The statute states that employers do not violate GINA by using or acquiring information about a “manifested”disease in an employee, disorder, or condition (even where the disease, disorder, or condition has a genetic basis).  Glaringly, the statute does not define the term “manifested.”

The regulations attempt to address this deficiency by stating that the term “manifestation” means where “an individual has been or could reasonably be diagnosed with the disease disorder by a health care professional.” While the regulations shed some light on the term, it is still unclear what conditions “could reasonably be diagnosed”.

            Acquiring Genetic Information

GINA prohibits employers from requesting, requiring, or purchasing genetic information relating to employees and applicants. The EEOC’s final regulations provide a list of actions that will be considered “requests” for genetic information.  These include, among others: (a) asking for information about an individual’s current health status in a manner that is likely to result in the receipt of genetic information; (b) conducting an internet search that is likely to result in obtaining genetic information and; (c) listening to third party conversations and searching an individual’s personal effects for the purpose of obtaining genetic information.  Although this definition provides some guidance, it leaves many questions unanswered.  For example, it is not clear just how an employer can ask about an employee’s health in a manner that is likely to result in learning genetic information.

Exceptions

GINA contains six exceptions to its prohibition that employers may not request, require, or purchase genetic information.  The EEOC’s regulations shed additional light on these exceptions.

  1. Inadvertent Requests

An employer does not violate GINA if it makes an inadvertent request for genetic information. For example, if an employer makes a lawful request for medical information in order to provide a reasonable accommodation to a disability and, in response, receives genetic information, the employer will be liable under GINA, unless the employer specifically directs the health care provider from whom it requests medical information not to provide genetic information.  The regulations contain model language employers can add to their information requests to take advantage of this safe harbor.

The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits employer 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 about a fetus carried by an individual or an individual’s family member receiving assistive reproductive services.

  1. Casual or Overheard Conversation

The EEOC realizes that employers may acquire genetic information through casual conversation or by overhearing a conversation.  Such accidental acquisitions do not violate GINA.  However, the regulations specifically prohibit an employer from asking follow-up questions once they accidentally learn about genetic information.  For example, if a manager casually asks about an employee’s ill family member and learns that his/her mother has tested positive for a genetic illness, the employer could not ask if other family members have the condition or whether the employee has been tested for the condition – even if the questions are intended to be supportive. The regulations specifically state that inquiries via social media or e-mail are also covered.

  1. Wellness Programs

GINA is also not violated if an employer acquires genetic information from offering health or genetic services as part of a voluntary wellness program.  For an employer to take advantage of this exception, the employee’s participation in the program and the decision to provide genetic information must be voluntary.

Before the regulations, it was not clear if a program would be deemed voluntary if it offered a financial incentive to participants.  The final regulations state that, to be considered voluntary, an employer may not require an individual to provide genetic information or penalize those who choose not to provide genetic information.  Additionally, the employee must knowingly and voluntarily provide a written authorization.  Most importantly, individually identifiable genetic information cannot be given to the employer.  Rather, the information may only be disclosed to the individual and the health care professionals or genetic counselors involved in providing the services.

In some circumstances, employers may offer financial incentives to encourage participation.  However, employers are prohibited from offering an inducement to provide genetic information or a penalty for not providing it.

  1. Leave of Absence Laws

Employers may request medical information about an employee or a family member to comply with the certification provisions of the Family and Medical Leave Act (“FMLA”) or similar state laws. For example, an employer is entitled to request information related to a child’s health condition to determine if the parent is eligible for an FMLA leave.  However, by doing so, the employer may learn that the child has a genetic disease, such as sickle cell anemia.  The receipt of that information does not violate GINA.  This exception also applies to an employee who is not entitled to a FMLA leave (or other legally mandated leave) but may be eligible for leave pursuant to a generous company policy.

  1. Information Acquired from Public Sources

An employer which obtains genetic information from documents that are publicly available, such as in newspapers, magazines, or on the internet does not violate GINA. For example, an employer does not violate GINA if it learns from an employee’s blog that she has the breast cancer gene.  Similarly, if an agent of the employer reads a newspaper story about an employee who is receiving a lung transplant due to cystic fibrosis, that receipt of information does not violate GINA.

However, an employer does violate GINA if it intentionally visits public or commercial sites with the intent or likely result of acquiring genetic information.  Therefore, the line between permissible and impermissible actions is very fine.  Importantly, an employer violates GINA if it acquires genetic information by viewing sources with restricted or limited access, such as court records, medical databases, or even social networking sites that require permission for access, such as Facebook or LinkedIn.

  1. Genetic Monitoring Programs

Obtaining genetic information necessary to monitor the biological effects of toxic substances in the workplace (as required by federal or state law) does not violate GINA. An employer must follow very strict guidelines when obtaining genetic information for this purpose and therefore should consult with legal counsel.

Going Forward

At first glance, GINA appears to be a law with little relevance to most employers.  However, the new regulations make it clear that employers must be careful to comply with the law in administering health or leave related policies and forms.

To comply with GINA, at a minimum, employers should:

  1. Update their handbooks to include genetic information as a protected class.
  2. Review and revise FMLA and ADA forms, as well as forms relating to any employer mandated physical examination.
  3. Incorporate the safe harbor language in all requests for medical information.
  4. Update non discrimination posters to incorporate GINA.
  5. Adopt and follow privacy procedures to protect medical information including genetic information.
  6. Employers that ask employees to complete health risk assessments as part of a wellness program should identify the questions that seek genetic information and make it clear that employees need not respond to those questions to receive any offered financial incentive.
  7. Train managers and human resources employees about GINA’s requirements, particularly those regarding the prohibition against acquiring genetic information.

It is also important to note that, while GINA only covers employers with 15 or more employees, some states have also passed laws that protect genetic information and apply to smaller employers.

If you have any questions about GINA, your obligations or any other employment issues, please do not hesitate to contact us.