Final Rules Implementing Title II of the Genetic Information Nondiscrimination Act (GINA) Issued By the EEOC

January 5, 2011

The Equal Employment Opportunity Commission (EEOC) has issued final rules for implementing Title II of the Genetic Information Nondiscrimination Act (GINA). The rules become effective Jan. 11, 2011 for employers with 15 or more employees. Many states have similar laws that apply to employers with fewer than 15 employees. If you have fewer than 15 employees, check your state's law on genetic discrimination. GINA protects employees, applicants, and former employees (covered individuals) from employment-related discrimination based on genetic information.

What is "genetic information"? Under the final rules, genetic information covers a wide range of possible information that an employer might learn about a covered individual, including:

    * Information about a covered individual's genetic tests.

      Genetic tests – including DNA testing – look for changes in an individual's genes or for changes in factors relating to an individual's genes (hereditary units that determine a person's particular characteristics). These tests can help in diagnosing and treatment of genetic-related health conditions. Results of genetic tests can mean an individual has an inherited health-related disorder.

    * Information about the genetic tests of a covered individual's family member.

      Family member. The definition of family member in the rules is rather broad. It goes beyond just immediate, blood relatives. It includes dependents and relations to the fourth degree, whether or not they are related by marriage, birth, adoption, or placement for adoption. For example, great-great-grandparents and first cousins once-removed are family members.

    * Information about a covered individual's family medical history.
    * Information obtained from requests for, and receipt of, genetic services by an individual or a family member.
    * Genetic information about a fetus carried by a covered individual or their family member, or about an embryo legally held by a covered individual or their family member using assisted reproductive technology.

GINA gives broad protection from discrimination to covered individuals and:

1. Prohibits covered employers from using any genetic information in making employment-related decisions.

2. Similar to the federal Title VII of the Civil Rights Act, prohibits a wide range of discrimination and prohibits harassment based on an individual's personal or family-related genetic information or history.

3. Prohibits employers from retaliating against employees who oppose employment practices that are unlawful under GINA.

4. Makes it unlawful for employers to use genetic information to make decisions concerning health benefits using applicant or employee genetic information.

The final rules do make six exceptions to the general prohibition against an employer obtaining and using genetic information. These exceptions are:

    * Inadvertently requesting or acquiring genetic information. An example of learning such information inadvertently would be overhearing a conversation or learning it from a third-party without soliciting or seeking the information.
    * Voluntarily provided information, learned as part of health or genetic services such as voluntary wellness programs.
    * Complying with medical and family leave. Covered employers can request genetic information to comply with certification requirements of the Family and Medical Leave Act (FMLA), state or local leave laws, or certain employer leave policies.
    * Learning from publicly or commercially available documents. Such sources include newspapers, books, magazines, and Internet sources. (This exception does not apply to information obtained from restricted sources, sources accessed with the intent to obtain genetic information, or if the source is one likely to contain genetic information.)
    * Learning from monitoring required by law or provided voluntarily. An example is doing genetic monitoring to see if employees are being affected by harmful substances in the workplace, as required by the Occupational Safety and Health Administration (OSHA).
    * Learning from DNA testing for law enforcement purposes. GINA allows employers to engage in DNA testing for law enforcement purposes as a forensic laboratory, or for purposes of human remains identification. 

GINA and the rules implementing GINA create three major risks for the employer and those representing the employer.

Risk #1. Intentionally seeking genetic information about former employees, employees, applicants, and their family members, then using the information to illegally discriminate against and/or harass the covered individuals.

Risk #2. Unintentionally learning genetic information about covered individuals, then using the information to illegally discriminate against and/or harass the individuals.

Risk #3. Using legally acquired genetic information about covered individuals in a manner that illegally discriminates against and/or harasses the individuals.

These risks raise an important question: What should an employer do when lawfully requesting health-related information from or about a covered individual? The most common situation that raises this question is when an employer legally requests health-related information to support an employee's request for reasonable accommodation under the Americans with Disabilities Act or for sick leave.

The EEOC suggests the employer warn the employee and/or the health care provider from whom it requests the information not to provide genetic information. The warning could be in writing or oral. The EEOC's final rule suggests the following type of language:

The Genetic Information Nondiscrimination Act (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.

To comply with GINA... what not to do:

1. Don't gather genetic information about former employees, current employees, or their family members, unless you have a legal purpose for doing so.

2. No matter how you might learn genetic information about covered individuals, do not use the information to illegally discriminate against or harass covered individuals.

3. Keep any genetic information obtained about covered individuals in separate medical files – not commingled with the individuals' personnel files – and treat the information as confidential.

Finally, give notice of GINA to your applicants and employees. The EEOC requires that covered employers must post a notice informing their employees and job applicants of the provisions of GINA. The EEOC's current EEO poster is available on the eeoc.gov web site.

For more information, please contact your Perelson Weiner partner.


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