On November 9, 2010 the United States Equal Employment Opportunity Commission (EEOC) published a Final Rule implementing Title II  of the Genetic Information Nondiscrimination Act of 2008 (GINA).  The Final Rule can be found at 29 C.F.R. Part 1635 and will become effective on January 10, 2011.  Broadly, Title II of GINA: (1) prohibits discrimination on the basis of genetic information; (2) restricts employers and other covered entities from requesting, requiring, or purchasing genetic information; (3) requires genetic information be kept confidential and limits disclosure of genetic information; and (4) provides remedies for violations.  A separate set of interim final regulations addresses Title I, which regulates employer-sponsored group health plans and health insurers providing group and individual health insurance; these interim final regulations promulgated by the United States Departments of Labor, Treasury, and Health and Human Services in October, 2009 have not yet been finalized.

Definition of Genetic Information

The definition of "genetic information" is the foundation of the Final Rule.  Genetic information includes not only information about such things as DNA tests, but also "family medical history," which is defined as "information about the manifestation of disease or disorder in family members of the individual."  The definition of "family member" is quite broad and includes dependants and relations to the fourth degree, whether related by "marriage, birth, adoption, or placement for adoption."   Great-great-grandparents and first cousins once-removed meet this standard.

Coverage

Employers, labor organizations, employment agencies, and joint labor-management committees are covered entities subject to GINA's requirements.  Employees, former employees, and applicants for employment are protected by this act.

Prohibition on Discrimination

Covered entities may not discriminate on the basis of genetic information.  This prohibition includes harassment and retaliation.

Acquisition of Genetic Information

Of particular interest to employers, the Final Rule provides guidance regarding the prohibition – and its exceptions – against requesting, requiring, or purchasing genetic information.  The Final Rule makes clear that "requesting" information may include certain Internet searches, actively listening to third-party conversations, searching an individual's personal effects, and "making requests for information about an individual's current health status in a way that is likely to result in a covered entity obtaining genetic information." 

Employers who have the right under the FMLA or ADA to request medical information about the employee (such as to support a request for leave or to obtain fitness-for-duty information) must instruct the health care provider from whom the information is sought not to provide genetic information.  The Final Rules provides a notice that should be included in employer requests for medical information to alert the health care provider not to provide genetic information.  The text of the notice is included at the end of this article.

The Final Rule also provides guidance and examples regarding the six exceptions to the general prohibition against obtaining genetic information:

  • Inadvertently requested or required.  The prohibition does not apply to information obtained inadvertently.  The Final Rule provides examples of inadvertent acquisition, including overhearing a conversation, learning from a casual ("water cooler") conversation, learning from a third-party without soliciting or seeking the information, or learning from a social networking platform like Facebook when the employer was given permission to access the site by the employee (but where the employer did not access the platform seeking genetic information). Receipt of genetic information in response to an otherwise lawful request for medical information will not generally be considered inadvertent unless the requestor has directed the provider not to include genetic information, as discussed above.
  • Voluntary Wellness Programs.  Employers may acquire genetic information from their employees as part of a voluntary wellness program, but only if certain conditions are met: (1) the provision of information must be knowing, voluntary, and written; (2) only certain people are allowed access to the information; (3) any financial inducement must be tied to a health risk assessment itself, and participants must be eligible to receive the inducement whether or not they answer questions regarding genetic information; and (4) any financial inducement to participate in wellness programs based on acquired genetic information must also be offered to individuals with current such health conditions or lifestyles that put them at risk of developing such conditions.  The regulations clarify that a program is considered voluntary if the employer neither requires an individual to provide genetic information nor penalizes those who choose not to provide it.  The interim final regulations under Title I address wellness programs offered by group health plans and health insurers.
  • Medical Leave.  Covered entities may request genetic information to comply with the certification provisions of the FMLA, other leave laws, or the entity's policies for medical or family leave due to a health condition of an employee's family member.
  • Commercially or Publically Available Documents.  This exception applies to genetic information found in media such as newspapers, magazines, television, and the Internet.  However, this exception does not apply: (1) to medical databases, court records, or research databases available on a restricted basis; (2) to information acquired from sources like social media where unique permission is usually needed to join and not granted routinely; (3) when the covered entity sought access to the sources with the intent of obtaining genetic information; or (4) if the source is one that is likely to contain genetic information, such as on-line discussion groups focusing on genetic testing and genetic discrimination.
  • Monitoring of Effects of Toxic Substances in the Workplace.  Subject to various requirements, employers may acquire genetic information as part of a program to monitor the effect of toxic substances in the workplace.
  • Forensic Purposes.  The final exception allows certain employers to acquire genetic information from their employees for forensic law enforcement purposes, but only where the information is used for quality control purposes.

Regardless of how genetic information is obtained, however, it may not be used to discriminate against employees.

Confidentiality and Disclosure

Employers are generally required to keep any genetic information they possess in separate medical files and to treat the information as confidential.  Although the Final Rule provides that, for GINA-compliance purposes, information obtained before November 21, 2009 need not be removed from personnel files, the ADA has long required that medical records of employees be filed separately from personnel files.  Employers may disclose genetic information only in certain circumstances, including to the individual who is the subject of the information, to certain researchers, in response to a court order or investigation into compliance, as necessary for FMLA certification, or to public health agencies with regard to contagious diseases that present imminent hazards of death or illness.  If the employer discloses genetic information pursuant to a court order, the employer must inform the employee or relevant family member of the disclosure.

Notice to Employees

Employers must post a notice informing their employees of the provisions of GINA.  The EEOC's current EEO poster, which is available on the EEOC's website, includes GINA information. 

Remedies

Violations of Title II may result in awards of compensatory and punitive damages, attorney's fees, and injunctive relief.  The enforcement procedures follow those of Title VII.

Employer Compliance

The Final Rules takes effect January 10, 2011.  In preparation, employers should consider the following steps:

  • Ensure that all antidiscrimination policies include a prohibition against discrimination on the basis of genetic information and that all employees are aware of the policy.
  • Modify medical information request forms, as appropriate, to include the suggested language directing health care providers not to disclose genetic information.
  • Ensure that all genetic information is kept confidential and in medical files that are separate from personnel files.
  • Consult legal counsel for further information.

Text of Notice to Medical Providers

"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."

The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.