On November 9, 2010, the Equal Employment Opportunity Commission (“EEOC”) published its long-delayed final regulations interpreting the employment-related provisions of the Genetic Information Nondiscrimination Act (“GINA”), a federal law that went into effect for employers on November 21, 2009. GINA prohibits employers from discriminating in employment on the basis of genetic information (including family medical history) and restricts the acquisition and disclosure of genetic information by employers. The new regulations provide guidance for employers on the practical application of GINA’s provisions and establish new rules that employers should follow in obtaining health-related information about employees and their family members. Highlights of these regulations are discussed below.

The New GINA Regulations

The employment-related provisions of GINA apply generally to employers with fifteen or more employees, as well as to most federal and state governmental offices, regardless of size. Although GINA’s provisions expressly protect employees and applicants, the new regulations clarify that GINA protects former employees as well. For example, GINA would prohibit an employer from disclosing genetic information about a former employee to a prospective employer of that individual.

GINA prohibits employers from discriminating in employment on the basis of genetic information and from limiting, segregating, or classifying employees on the basis of such information. The regulations clarify that an employer will not violate these provisions when its actions are required by a law or regulation mandating genetic monitoring, such as certain regulations issued under the Occupational Safety and Health Act. Moreover, although GINA does not expressly refer to harassment, the EEOC takes the position that GINA’s nondiscrimination provision prohibits workplace harassment based on genetic information.

The provision of GINA likely to have the most immediate and widespread impact on employers is the general prohibition against acquiring genetic information about applicants and employees. GINA broadly defines “genetic information” as information about the genetic tests of an applicant/employee or of the applicant/employee’s family members, information about a request for or receipt of genetic services by an applicant/employee or his or her family members, and information about the manifestation of a disease or disorder of the applicant/employee’s family members. Thus, GINA generally prohibits employers from acquiring an applicant/employee’s family medical history, including any information about a family member’s disease or disorder. The regulations define “family members” as dependents who are or become related to an applicant or employee through marriage, birth, adoption, or placement for adoption and any blood relative within four degrees of relationship to an applicant or employee (that is, as far removed as a great-great-grandparent). The inclusion of persons who are not blood relatives of an applicant or employee may seem odd because they share no inherited genes with the applicant/employee, but the EEOC reasoned that an employer could discriminate against an employee based on the genetic information of a spouse or adopted child out of fear that the family member’s condition could run up health insurance costs. The new regulations note that information about race and ethnicity that is not derived from a genetic test is not genetic information under GINA. Thus, employers may continue to invite applicants and employees to identify their race and ethnicity for applicant-flow and affirmative action purposes without running afoul of GINA.

GINA’s restrictions on acquiring genetic information generally bar employers from requesting such information. The EEOC takes the position that requests for genetic information are not limited to inquiries directed to an applicant, employee, or health care provider, however. The regulations state that a request for genetic information includes conducting an Internet search on an individual in a way that is likely to produce results containing genetic information. For example, running an Internet search linking an individual’s name with a particular genetic trait would constitute a prohibited request for genetic information.

GINA contains a number of exceptions to its general prohibition against acquiring genetic information, and the new regulations address these exceptions in detail. One of the exceptions provides that an employer does not violate GINA when it inadvertently acquires information about family medical history. The EEOC takes the position that this exception applies to the inadvertent acquisition of any type of genetic information about an applicant/employee or his or her family members and not just genetic information in the form of family medical history. The regulations provide several examples of situations in which genetic information may be inadvertently acquired. For example, the exception applies to genetic information disclosed in response to an employer’s casual question about an individual’s general well-being (“How is your son feeling today?”) and to genetic information disclosed by an employee or applicant without any solicitation by the employer. When an employer inadvertently acquires genetic information in this manner, however, it may not ask follow-up questions that probe for genetic information (for example, “Do other family members have the condition?”). Similarly, the exception for inadvertently acquired information will ordinarily apply to genetic information that a manager or supervisor learns while reviewing a social networking profile that the manager or supervisor has permission to access, but if a manager or supervisor accesses a social networking site, even with permission, for the purpose of acquiring genetic information, the exception would not apply.

When an employer legitimately seeks health-related information in connection with employment (such as information relating to a request for a leave of absence or for reasonable accommodation of a disability), the employer may sometimes receive genetic information in response, even though the request did not specifically seek such information. The new regulations create a “safe harbor” to ensure that such genetic information will be deemed inadvertently acquired. This “safe harbor” will apply when the employer warns the person from whom it seeks health-related information not to provide genetic information, and the regulations provide sample language to use in giving that warning. Although failure to give the warning ordinarily will not preclude an employer from arguing that genetic information was inadvertently acquired, the EEOC takes the position that a warning is mandatory when an employer engages a health care professional to conduct any type of employment-related medical examination because the health care professional could be expected to acquire genetic information (for example, family medical history) in the absence of a warning. Moreover, the regulations provide that when a health care professional is engaged by an employer to determine an individual’s ability to perform a job, the employer must direct the health care professional not to collect genetic information as part of the examination.

Another statutory exception to the general prohibition against acquiring genetic information permits employers to acquire such information when they offer employees health or genetic services (such as a wellness program), provided the disclosure of genetic information by participating employees is voluntary, participating employees give voluntary written authorizations relating to genetic information, and certain safeguards are in place. In connection with these programs, the new regulations allow employers to offer certain financial inducements to participate in health or genetic services as long as employers do not offer inducements to disclose genetic information. For example, if an employer offers inducements to employees to complete a health assessment form including questions about family medical history, the employer must specifically identify the questions seeking genetic information and make it clear that employees need not answer those particular questions to receive the inducement.

GINA also provides an exception permitting the acquisition of genetic information (typically, family medical history) in connection with a request for leave to care for a family member with a serious health condition under the Family and Medical Leave Act or a similar state or local law. The regulations add that this exception also applies to employers that are not covered by a leave law but that have a uniformly applied policy granting leaves to care for ill family members. The regulations remind employers that family medical information obtained in connection with a leave request constitutes confidential genetic information under GINA and must be kept in a medical file separate from the employee’s general personnel file.

Another statutory exception to GINA’s general prohibition against the acquisition of genetic information applies to the purchase of commercially and publicly available materials that may include family medical history. The regulations interpret this exception as applying to the acquisition of any type of genetic information (not just family medical history), whether by purchase or otherwise, from commercially and publicly available materials. According to the regulations, this exception applies to genetic information acquired from newspapers, magazines, books, television, movies, and certain Internet resources. With respect to Internet resources, the regulations provide that the exception does not apply to media sources that require permission for access from a particular individual or membership in a particular group such as a professional organization, as those sources would not be considered commercially and publicly available. The mere fact that a website requires visitors to acquire a user name and/or password does not take the site outside the scope of the exception, however. Even when a website or other information source is commercially and publicly available, the regulations state that the exception does not apply when an employer accesses the information source for the purpose of acquiring genetic information.

The new regulations address additional topics relating to GINA, including confidentiality requirements, permissible disclosures of genetic information, and the relationship of GINA to other federal laws such as the Americans with Disabilities Act and the Health Insurance Portability and Accountability Act (“HIPAA”).

Practical Implications

The foregoing discussion summarizes only those aspects of the new GINA regulations that are likely to have the most immediate impact on employers. In light of these regulations, employers should consider taking the following proactive steps to avoid liability under GINA:

  • Train managers and supervisors about what constitutes genetic information under GINA. The broad definition of “genetic information,” which includes information about a disease or disorder that any member of an employee’s extended family has, can be a trap for the unwary.
  • Train managers and supervisors about GINA’s general prohibitions against acquiring and disclosing genetic information. Although a casual inquiry about the well-being of an employee’s relative is permissible, follow-up questions seeking more information about any disease the relative might have may violate GINA, even if asked innocently out of genuine curiosity or concern.
  • Implement procedures to ensure genetic information legitimately acquired by the employer is maintained in confidential medical files separate from the general personnel files. Most employers are well-acquainted with the Americans with Disabilities Act’s requirement that medical information about employees be maintained in separate confidential medical files, but GINA adds the requirement that medical information about relatives of an employee also be kept in such files. This would include, for example, medical information about an employee’s family member acquired in connection with a request for family and medical leave. Although the new regulations do not require employers to purge personnel files of genetic information acquired before the effective date of GINA, employers would be prudent to do so to prevent managers and supervisors from having access to genetic information that could be used to discriminate against employees in violation of GINA and to prevent an inadvertent disclosure of genetic information.
  • Employers should modify any forms they use seeking health-related information (for example, medical certification forms used in connection with leave requests and directions for health care providers performing post-offer, preemployment medical examinations) to add appropriate warnings against disclosing genetic information. Similarly, employers that sponsor employee wellness programs offering inducements for completing a health-assessment form should ensure that the form clearly identifies the questions seeking genetic information and states that employees need not answer those questions to receive the inducement.