QUESTIONS AND ANSWERS: EXECUTIVE ORDER 13145
TO PROHIBIT DISCRIMINATION IN FEDERAL EMPLOYMENT BASED ON GENETIC INFORMATION

In a February 8, 2000 ceremony held at the American Association for the Advancement of Science, President William J. Clinton signed an Executive Order prohibiting federal departments and agencies from making employment decisions based on protected genetic information. In issuing the first Executive Order of the 21st century, the President noted that the privacy of an individual's genetic information is among the most important things that we, as a society, need to protect. A February 8 White House statement noted that "[w]hile [genetic] advances promise great benefits, they also carry potential perils. Today's actions are part of the Administration's longstanding effort to ensure that we harness scientific advances to our most cherished values." The President further expressed his hope that the Executive Order, applicable only to the civilian federal workforce, would "set an example and pose a challenge for every employer in America" to adopt a policy not to discriminate on the basis of protected genetic information, "because . . . no employer should ever review your genetic records along with your resume." The Executive Order assigns to the U.S. Equal Employment Opportunity Commission (EEOC) the responsibility for coordinating this policy with federal departments and agencies.

1. What is the purpose of the Executive Order?

The purpose of the Executive Order is to "provide equal employment opportunity in Federal employment for all qualified persons and to prohibit discrimination against employees based on protected genetic information or information about a request for or the receipt of genetic services. This policy of equal opportunity applies to every aspect of Federal employment."

2. Who does the Executive Order protect?

The Executive Order applies to the federal civilian workforce, including current federal employees, applicants for federal government jobs, and former federal employees.

3. What is "protected genetic information"?

The Executive Order defines protected genetic information as:

• Information about an individual's genetic tests or genetic tests of that individual's family members; and
• Information about the occurrence of disease, or medical condition or disorder in family members of the individual.

4. Does "protected genetic information" include information about an individual's current medical condition?

No. Protected genetic information does not include current health status information about applicants and employees, such as age, gender, and physical examination results exclusive of family medical history. Departments and agencies have a limited right under the Rehabilitation Act of 1973 to acquire information about, and act on the basis of, an individual's current health status.

5. What does the Executive Order prohibit?

The Order prohibits discrimination based on:

• protected genetic information;
• a request for genetic services; or
• the receipt of genetic services.

Federal departments and agencies may not discharge, fail or refuse to hire, or otherwise discriminate against any individual with respect to the compensation, terms, conditions, or privileges of employment because of protected genetic information or a request for, or receipt of, genetic services. Similarly, federal departments and agencies may not limit, segregate, or classify an individual or otherwise adversely affect the individual's status because of such information.

6. May a federal department or agency request or require family medical history from an applicant or employee?

Yes, but only in limited circumstances and for limited reasons.

• First, a federal department or agency may request or require family medical history from an applicant as long as it has made a conditional offer of employment. A federal department or agency also may ask for family medical history from a current employee where the request or requirement is consistent with the Rehabilitation Act standards for seeking medical information from current employees.
• Second, departments and agencies must meet these additional prerequisites:
  • the information may be used only to determine whether the department or agency needs to require further medical testing of the individual in order to assess whether the individual has a current medical condition that may affect his/her ability to perform the essential functions of the job s/he seeks or holds; and
  • medical personnel involved in making the decision whether to require further testing will be the only persons with access to this information.

The Execut ive Order further permits a department or agency to use an applicant's or employee's family medical history where the department or agency subsequently provides genetic or health care services to the individual at the individual's request.

7. May a federal department or agency obtain or disclose protected genetic information about an individual or information about an individual's request for genetic services?

Yes, but only in several circumstances:

• Where the department or agency provides genetic or health care services: A department or agency may obtain protected genetic information from individuals using those services. The Executive Order allows disclosure of that information only to: the individual, the person(s) providing treatment to the individual, and certain persons engaged in research.
• Where the department or agency engages in research that complies with Part 46 of title 45, Code of Federal Regulations: A department or agency may obtain and disclose protected genetic information where it conducts research that complies with 45 C.F.R. Part 46, which concerns the protection of human subjects of medical research.
• Where the department or agency seeks to monitor the biological effects of toxic substances in the workplace: A department or agency may obtain and disclose protected genetic information from an individual to monitor the biological effects of toxins in the workplace. The individual must be advised of his/her right to the information obtained, when such information becomes available, and the procedure for obtaining it. Individually-identifiable genetic information generated by monitoring may be provided only to health care personnel.
• Where the department or agency is compelled by proper authority: A department or agency may disclose protected genetic information where required by statute, by lawful court order, or by Congressional subpoena. A department or agency also may disclose protected genetic information to executive branch officials investigating compliance with the Order where it is relevant to the investigation.
• Where the genetic information is collected as a part of a lawful program the primary purpose of which is for identification purposes: A department or agency may obtain genetic information where it is to be used to identify the remains of an individual.

8. Does the Executive Order require that an individual give his/her consent to a federal department or agency before it may seek or disclose genetic information?

Yes. An individual must consent to the collection and use of protected genetic information before the department or agency may obtain it for health care or monitoring purposes. Consent must be knowing and voluntary.

9. Does the Executive Order impose any safekeeping requirements on federal departments or agencies collecting protected genetic information?

Yes. Protected genetic information must be kept confidential and separate from personnel files, just like other medical information.

10. Does the Executive Order create new rights against federal departments or agencies?

No. The Executive Order sets forth Administration policy only. It does not create any legally enforceable right or benefit.

11. Do federal departments or agencies have any affirmative obligations under the Executive Order?

Yes. Departments and agencies must carry out the Executive Order to the extent allowed by their existing statutory and regulatory authorities, disseminate the policy set forth in the Executive Order, and designate a high level official responsible for carrying out its requirements.

12. Will EEOC provide further guidance on employment discrimination based on protected genetic information?

Yes. As noted above, EEOC is responsible for coordinating federal policy prohibiting employment discrimination against individuals on the basis of protected genetic information. We envision this to include issuing technical guidance to federal departments and agencies and conducting periodic coordination meetings with various affected departments and agencies.

13. If a federal applicant or employee believes that a department or agency has violated the Executive Order, what should s/he do?

• Because much of what is prohibited under the Executive Order is also prohibited under section 501 of the Rehabilitation Act of 1973, federal sector applicants and employees who believe that a department or agency has violated a provision of the Executive Order may pursue that issue under the procedure set forth at 29 C.F.R. Part 1614. Individuals should be aware, however, that not all conduct that violates the Executive Order will also constitute a violation of the Rehabilitation Act.
• The first step in the federal sector equal employment opportunity (EEO) process requires that the individual alleging discrimination contact an EEO counselor within 45 days of the alleged violation. If the EEO counseling process ends without resolution, the individual may file a formal complaint against the department or agency.
• For more information about the federal sector EEO complaint process, contact the EEOC's publication office at 1-800-669-3362 (voice) or 1-800-800-3302 (TTY) and ask for a copy of an EEOC fact sheet on the federal sector process. Information also is available on the EEOC's web site, http://www.eeoc.gov.

14. Where can I get a copy of the Executive Order?

Executive Order 13145 has been published at 65 Fed. Reg. 6,877 (Feb. 10, 2000). You may access a copy of the Order at http://www.pub.whitehouse.gov/uri-res/I2R?urn:pdi://oma.eop.gov.us/2000/2/8/8.text.1.

This page was last modified on February 14, 2000.

Return to Home Page