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Policy Guidance on
Executive Order 13145:
To Prohibit Discrimination in
Federal Employment Based on
Genetic Information

The U.S. Equal Employment Opportunity Commission
  NOTICE Number
EEOC 915.002
Date
    7/26/00

1. SUBJECT: EEOC Policy Guidance on Executive Order 13145: To Prohibit Discrimination in Federal Employment Based on Genetic Information

2. PURPOSE: This policy guidance explains the definitions, prohibitions, and exceptions in Executive Order 13145.

3. EFFECTIVE DATE: Upon receipt.

4. EXPIRATION DATE: As an exception to EEOC Order 205.001, Appendix B, Attachment 4, a(5), this Notice will remain in effect until rescinded or superseded.

5. ORIGINATOR: Coordination Division, Office of Legal Counsel.

6. INSTRUCTIONS: File after Section 902 of Volume II of the Compliance Manual.

7/26/00                    /s/
Date                     Ida L. Castro
                        Chairwoman

DISTRIBUTION: CM Holders


Policy Guidance on Executive Order 13145: To Prohibit Discrimination in Federal Employment Based on Genetic Information

Table of Contents

I INTRODUCTION

II BACKGROUND

Relationship to the Rehabilitation Act/Americans with Disabilities Act

Coverage

III DEFINITIONS IN THE EXECUTIVE ORDER

  1. How does the Executive Order define protected genetic information?
  2. What is the Executive Order's definition of a genetic test?
  3. Why is family medical history considered "protected genetic information"?
  4. Does "protected genetic information" include information about an applicant's or an employee's current health status?
  5. How does the Executive Order define genetic monitoring?
  6. How does the Executive Order define genetic services?

IV PROHIBITIONS UNDER THE EXECUTIVE ORDER

Adverse Employment Actions Based on Protected Genetic Information

Confidentiality of Protected Genetic Information

Disclosure of Protected Genetic Information

V COLLECTION AND USE OF PROTECTED GENETIC INFORMATION

  1. May a department or agency request or require the results of genetic tests from an applicant, or request or require that the applicant take a genetic test under the Executive Order?
  2. May a department or agency obtain and use family medical history from an applicant under the Executive Order?
  3. 9. Are the Executive Order's limitations on obtaining and using protected genetic information from applicants the same as the Rehabilitation Act's restrictions on disability-related inquiries for applicants?
  4. May a department or agency require a current employee to take a genetic test under the Executive Order?
  5. May a department or agency obtain and use family medical history from a current employee under the Executive Order?
  6. May a department or agency terminate, refuse to hire, or otherwise adversely affect the employment of an individual based on family medical history?
  7. May a department or agency medical office obtain protected genetic information about an employee who uses genetic or health care services provided by the department or agency medical office?
  8. May a department or agency get protected genetic information from an employee when it conducts medical research in which the employee is a participant?
  9. May a department or agency conduct genetic monitoring of employees?
  10. May a department or agency collect protected information for Identification purposes?

VI PROCEDURE FOR ASSERTING NONCOMPLIANCE WITH THE EXECUTIVE ORDER

VII ASSERTING VIOLATIONS OF SECTION 501 OF THE REHABILITATION ACT

  1. Can an individual be regarded as having a disability based on information obtained from a genetic test or family medical history?
  2. Can an individual with a misspelled or altered gene associated with a severe disease or disorder be covered under the actual disability prong of the definition of disability under the Rehabilitation Act?
  3. Is an individual who has an association with a person who has a disability causes by a genetic impairment protected under the Rehabilitation Act?
  4. What is the procedure for alleging a violation of section 501 of the Rehabilitation Act?

Policy Guidance on Executive Order 13145:
To Prohibit Discrimination in Federal Employment Based on Genetic Information

I. INTRODUCTION

On February 8, 2000, President Clinton signed Executive Order 13145, which prohibits discrimination on the basis of protected genetic information in the Executive branch.(1) The President expressed the hope that the Executive Order 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."(2)

Executive Order 13145 is intended to ensure that Executive branch applicants and employees are judged on their current ability to perform the jobs they seek or hold, and not on the possibility that they might, some day, develop a disease or condition. Accordingly, the Executive Order places stringent limits on the collection, use, and disclosure of protected genetic information.

The Executive Order assigns to the U.S. Equal Employment Opportunity Commission (EEOC or Commission) the responsibility for coordinating "the policy of the Government of the United States to prohibit discrimination . . . based on protected genetic information, or information about a request for or the receipt of genetic services."(3) The EEOC is issuing this Policy Guidance to:

  • explain what type of genetic information is covered by the Executive Order;
  • give examples of how the Executive Order affects the collection, use, and disclosure of protected genetic information in Executive branch employment; and
  • explain how an individual can establish that s/he has a disability under section 501 of the Rehabilitation Act of 1973, as amended,(4) based on protected genetic information.

II. BACKGROUND

Relationship to the Rehabilitation Act / Americans with Disabilities Act

The Executive Order does not create any new enforceable rights for Executive branch applicants and employees. As more fully discussed in this Guidance, applicants and employees who believe that a department or agency has violated the Executive Order by discriminating on the basis of protected genetic information may be able to establish coverage under section 501 of the Rehabilitation Act (section 501, the Rehabilitation Act, or the Act).

In 1992, Congress amended section 501 to apply the standards of Title I of the Americans with Disabilities Act (ADA) to all complaints of non-affirmative action employment discrimination.(5) The Commission has issued regulations and enforcement guidances that interpret and provide Commission policy under the ADA. This Policy Guidance will cite to ADA regulations and enforcement guidances when they are relevant to the Executive Order or the Rehabilitation Act.

Coverage

The Executive Order directs Executive departments and agencies to extend the policy of nondiscrimination based on protected genetic information to all its employees.(6)

III. DEFINITIONS IN THE EXECUTIVE ORDER

  1. How does the Executive Order define protected genetic information?

    Protected genetic information includes:

    • information about an individual's genetic tests;
    • information about the genetic tests of an individual's family members; or
    • information about the occurrence of a disease, or medical condition or disorder in family members of the individual (family medical history).(7)
  2. What is the Executive Order's definition of a genetic test?

    A genetic test includes the "analysis of human DNA, RNA, chromosomes, proteins, or certain metabolites in order to detect disease-related genotypes or mutations."(8) The Executive Order refers to RNA, chromosomes, proteins, and metabolites to make clear that genetic tests include not only examination of the DNA itself but also of other substances that provide information about the condition of an individual's DNA.

  3. Why is family medical history considered "protected genetic information"?

    In an employment context, family medical history does not provide information about an individual's current ability to do the job. Therefore, family medical history, like genetic test results, should not be used for employment decisions.

  4. Does "protected genetic information" include information about an applicant's or an employee's current health status?

    Generally, no. Information about an applicant's or employee's current health status, which under the Executive Order includes information about sex, age, physical exams, and chemical, blood, or urine analyses, generally is not considered protected genetic information.(9) If, however, the department or agency obtains protected genetic information when seeking current health status information, the Executive Order states that the protected genetic information will be subject to the same restrictions that apply to protected genetic information generally.(10)

    Although the Executive Order permits departments or agencies to obtain current health status information, the Rehabilitation Act and other applicable laws may limit a department's or agency's right to request or require a medical examination, including chemical, blood, or urine analyses. As discussed below, in response to Questions 8 and 11, the Rehabilitation Act regulates disability-related inquiries and medical examinations of applicants and employees.(11)

  5. How does the Executive Order define genetic monitoring?

    Genetic monitoring is the periodic medical examination of employees to determine whether any of their genes have been affected by the toxic substances they use or are exposed to in performing their jobs. Genetic monitoring enables an employer to deal with the effect of workplace toxins and to attempt to control their effect on employees.(12) The requirements applicable to genetic monitoring are discussed in response to Question 15.

  6. How does the Executive Order define genetic services?

    Genetic services are health services, including genetic tests, provided to obtain or interpret genetic information for diagnostic or therapeutic purposes, or for purposes of genetic education or counseling.(13) The conditions under which a department or agency may obtain protected genetic information when providing genetic services are discussed in response to Question 13.

IV. PROHIBITIONS UNDER THE EXECUTIVE ORDER

The Executive Order directs departments and agencies to implement several nondiscrimination requirements. Under the Executive Order, departments and agencies must not:

  • engage in adverse employment actions on the basis of protected genetic information or information about a request for, or the receipt of, genetic services;
  • request, require, collect, or purchase protected genetic information about employees, with limited exceptions;
  • maintain protected genetic information in general personnel files, rather than in confidential medical files; or
  • disclose protected genetic information about employees, except in limited circumstances.(14)

This section discusses all of these prohibitions except the prohibition on collecting protected genetic information, which is best understood in light of its limited exceptions explained in Section V, below.

Adverse Employment Actions Based on Protected Genetic Information

The Executive Order states that the policy of the federal government is to provide equal employment opportunity to all qualified persons. Federal policy prohibits a department or agency from discharging, failing to hire, or otherwise discriminating against a covered individual with respect to the individual's compensation and terms, conditions, and privileges of employment based on the person's "protected genetic information," or the person's request for, or receipt of, genetic services. Federal policy also prohibits a department or agency from limiting, segregating, or classifying its employees based on protected genetic information.

This policy applies to every aspect of employment in the Executive branch.

Example A : Lisa works for a federal agency in a non-managerial position. Lisa's supervisor, Karen, learns that she took part in a breast cancer study that included genetic testing. Lisa has expressed an interest in, and is qualified for, a detail to another position that the agency views as career-enhancing. If Karen were to deny Lisa's request for the detail based on her participation in the breast cancer study, she would be acting in violation of the Executive Order. Karen would be limiting Lisa's employment opportunities based on her receipt of genetic services. : Lisa works for a federal agency in a non-managerial position. Lisa's supervisor, Karen, learns that she took part in a breast cancer study that included genetic testing. Lisa has expressed an interest in, and is qualified for, a detail to another position that the agency views as career-enhancing. If Karen were to deny Lisa's request for the detail based on her participation in the breast cancer study, she would be acting in violation of the Executive Order. Karen would be limiting Lisa's employment opportunities based on her receipt of genetic services.

Example B: Tonya learns that David's father died recently of pancreatic cancer and that David's brother is seriously ill with the same disease. David is a well-respected and highly-rated subordinate employee in Tonya's research division. Budget cuts to the division will require layoffs, and Tonya will lose two employee slots. If Tonya decides to identify David's slot for elimination based on his family history of cancer, she will be violating the Executive Order.: Tonya learns that David's father died recently of pancreatic cancer and that David's brother is seriously ill with the same disease. David is a well-respected and highly-rated subordinate employee in Tonya's research division. Budget cuts to the division will require layoffs, and Tonya will lose two employee slots. If Tonya decides to identify David's slot for elimination based on his family history of cancer, she will be violating the Executive Order.

Confidentiality of Protected Genetic Information

Under the Executive Order, departments and agencies must assure the confidentiality of any protected genetic information that they collect. This information must be treated with the same care as other confidential medical information and must be kept in files that are maintained separately from official personnel files.(15)

The Rehabilitation Act also requires that applicant and employee medical information be kept confidentially in separate files.(16)

Disclosure of Protected Genetic Information

The Executive Order permits disclosure, in limited circumstances, of protected genetic information and of information about an employee's request for or receipt of genetic services.(17) These narrow exceptions permit disclosure only:

  • to the employee;
  • to a person conducting research that complies with 45 C.F.R. Part 46, which concerns research involving human subjects;
  • if required by federal law;
  • in response to a congressional subpoena or an order from a court with competent jurisdiction;(18) or
  • to Executive branch officials investigating compliance with the Executive Order.

Example C: During a post-offer medical examination, Richard informs the agency's medical office of a family medical history of a genetic-based disorder with clinical indications that include seizures. Richard reports that he has been diagnosed with this disorder and recently had a seizure during the day at his prior job. Under the Executive Order, the agency's medical office may not disclose that Richard has a family medical history of this disorder. The agency's medical office may disclose that Richard had a seizure only as permitted by the Rehabilitation Act.(19): During a post-offer medical examination, Richard informs the agency's medical office of a family medical history of a genetic-based disorder with clinical indications that include seizures. Richard reports that he has been diagnosed with this disorder and recently had a seizure during the day at his prior job. Under the Executive Order, the agency's medical office may not disclose that Richard has a family medical history of this disorder. The agency's medical office may disclose that Richard had a seizure only as permitted by the Rehabilitation Act.(19)

Example D: Sara sought and received health care services from her agency. She voluntarily provided the agency medical office with the results of a genetic test. Several months later, the agency received a subpoena from a court, seeking copies of the protected genetic information that Sara provided. Under the Executive Order, the agency must comply with the subpoena, but first should inform Sara of the demand for the protected genetic information and allow her to contest the subpoena, unless the subpoena imposes a confidentiality requirement.: Sara sought and received health care services from her agency. She voluntarily provided the agency medical office with the results of a genetic test. Several months later, the agency received a subpoena from a court, seeking copies of the protected genetic information that Sara provided. Under the Executive Order, the agency must comply with the subpoena, but first should inform Sara of the demand for the protected genetic information and allow her to contest the subpoena, unless the subpoena imposes a confidentiality requirement.

V. COLLECTION AND USE OF PROTECTED GENETIC INFORMATION

Under the Executive Order, there are limited situations in which Executive departments and agencies may collect and use protected genetic information concerning applicants and employees. The general prohibition and these exceptions are explained in the questions and answers that follow.

  1. May a department or agency request or require the results of genetic tests from an applicant, or request or require that the applicant take a genetic test under the Executive Order?

    No. A department or agency may never request or require the results of genetic tests from an applicant. Nor may a department or agency ever request or require that an applicant take a genetic test.

  2. May a department or agency obtain and use family medical history from an applicant under the Executive Order?

    Yes, in very limited circumstances. The Executive Order allows department or agency medical personnel to request or require, and to use, family medical history from applicants only if certain conditions are met.

    The first condition is that the request or requirement must be "consistent with the Rehabilitation Act and other applicable law."(20) To ensure consistency with the Act, a department or agency may request or require family medical history only from post-offer applicants - that is, from individuals to whom the department or agency has made conditional offers of employment.(21)

    Departments and agencies must meet three additional conditions in order to ensure that their use of family medical history comports with the Executive Order:

    • only department or agency medical personnel may obtain family medical history, solely for the purpose of deciding whether further medical evaluation is needed to diagnose a current disease, or medical condition or disorder;
    • the current disease, or medical condition or disorder must be one that could prevent the individual from performing the essential functions of the position for which the individual has been given a conditional offer; and
    • family medical history may not be disclosed to anyone other than medical personnel involved in, or responsible for, assessing whether further medical evaluation is needed to diagnose a current disease, medical condition or disorder.(22)

    In sum, the Executive Order allows department or agency medical personnel to obtain family medical history from all post-offer applicants in the same job category. The department or agency medical personnel may use family medical history, however, only to help decide whether to conduct further evaluation to diagnose a current disease, medical condition or disorder that could prevent the individual from performing essential job functions.

    Example A: An agency makes conditional firefighter job offers to Sergei, Albert, and Cynthia. During a post-offer medical examination, an agency physician asks all three for their family medical histories. Sergei discloses a family medical history of heart disease. Physical limitations associated with different types of heart disease could prevent Sergei from putting out fires or performing certain emergency procedures, which are essential functions of the firefighter job. Based on Sergei's family medical history, the agency may conduct further medical assessment to determine if Sergei currently has a type of heart disease that could prevent him from performing the essential functions of the job. : An agency makes conditional firefighter job offers to Sergei, Albert, and Cynthia. During a post-offer medical examination, an agency physician asks all three for their family medical histories. Sergei discloses a family medical history of heart disease. Physical limitations associated with different types of heart disease could prevent Sergei from putting out fires or performing certain emergency procedures, which are essential functions of the firefighter job. Based on Sergei's family medical history, the agency may conduct further medical assessment to determine if Sergei currently has a type of heart disease that could prevent him from performing the essential functions of the job.

    Example B: Tammi disclosed a family medical history of sickle cell anemia during a post-offer medical examination. She also volunteered information that she participated in a sickle cell screening program. The Executive Order prohibits the agency's physician from requesting information concerning the results of the genetic screening program in which Tammi participated. Under the Executive Order, family medical history is the only protected genetic information to which agency medical personnel are entitled from applicants. : Tammi disclosed a family medical history of sickle cell anemia during a post-offer medical examination. She also volunteered information that she participated in a sickle cell screening program. The Executive Order prohibits the agency's physician from requesting information concerning the results of the genetic screening program in which Tammi participated. Under the Executive Order, family medical history is the only protected genetic information to which agency medical personnel are entitled from applicants.

  3. Are the Executive Order's limitations on obtaining and using protected genetic information from applicants the same as the Rehabilitation Act's restrictions on disability-related inquiries for applicants?

    No. The Executive Order's limitations are stricter than those under the Rehabilitation Act, which allows all disability-related inquiries of post-offer applicants. Under the Executive Order a department or agency is prohibited from requesting, requiring, or using genetic tests or information from genetic services from post-offer applicants, and is limited in the use of family medical history from such applicants.

  4. May a department or agency require a current employee to take a genetic test under the Executive Order?

    No. A department or agency may never require that an employee take a genetic test. Nor may a department or agency ever request or require information about genetic tests from an employee.

  5. May a department or agency obtain and use family medical history from a current employee under the Executive Order?

    Yes, in very limited circumstances. The Executive Order allows department or agency medical personnel to request or require, and to use, family medical history from current employees only if certain conditions are met.

    First, the request or requirement for employee family medical history must comply with the Rehabilitation Act and other applicable law. Whenever department or agency medical personnel could make disability-related inquiries of the employee under the Rehabilitation Act, they may seek family medical history. The Act prohibits employee disability-related inquiries unless they are shown to be "job-related and consistent with business necessity."(23) To meet this standard, the department or agency must demonstrate a reasonable belief, based on objective evidence, that:

    • the employee's ability to perform essential job functions will be impaired by a medical condition, or
    • the employee will pose a direct threat due to a medical condition.(24)

    Departments and agencies must meet three additional conditions in order to ensure that their use of family medical history comports with the Executive Order:

    • only department or agency medical personnel may use family medical history, solely for the purpose of deciding whether further medical evaluation is needed to diagnose a current disease, or medical condition or disorder;
    • the current disease, or medical condition or disorder must be one that could prevent the individual from performing the essential functions of the position held or desired; and
    • family medical history may not be disclosed to anyone other than medical personnel involved in, or responsible for, assessing whether further medical evaluation is needed to diagnose a current disease, medical condition or disorder.(25)

    In sum, when a department or agency reasonably believes, based on objective evidence, that an employee's ability to perform essential job functions will be impaired by a medical condition, or that an employee will cause a direct threat based on a medical condition, department or agency medical personnel may request or require family medical history. Family medical history may be used, however, only to determine whether to conduct a further medical evaluation of the employee in pursuit of a diagnosis of a current disease, medical condition or disorder that could prevent the employee from performing essential job functions.(26)

    Example A: An essential function of Delaine's job is moving heavy boxes from a loading dock to a storage area. Delaine's supervisor notices that Delaine has been having problems moving boxes for several days, and that he has been complaining of back discomfort and asking co-workers to move some boxes for him. The supervisor sends Delaine to the agency's health office for an examination.(27) During the examination, Delaine informs the health care provider that he hurt his back lifting a box a week earlier and that he cannot lift the heavier boxes. The health care provider may ask Delaine for his family medical history in order to determine whether a further medical evaluation may be needed to diagnose Delaine's current condition. : An essential function of Delaine's job is moving heavy boxes from a loading dock to a storage area. Delaine's supervisor notices that Delaine has been having problems moving boxes for several days, and that he has been complaining of back discomfort and asking co-workers to move some boxes for him. The supervisor sends Delaine to the agency's health office for an examination.(27) During the examination, Delaine informs the health care provider that he hurt his back lifting a box a week earlier and that he cannot lift the heavier boxes. The health care provider may ask Delaine for his family medical history in order to determine whether a further medical evaluation may be needed to diagnose Delaine's current condition.

    The Executive Order also allows a department or agency to obtain family medical history, under limited circumstances, if an employee uses genetic or health care services provided by the department or agency. This exception is discussed in Question 13.

  6. May a department or agency terminate, refuse to hire, or otherwise adversely affect the employment of an individual based on family medical history?

    No. Under the Executive Order, family medical history may be used only to decide whether medical evaluation is necessary to diagnose a current medical condition that could prevent the individual from performing the essential functions of the position held or desired.

    Under the Rehabilitation Act, family medical history, standing alone, can never establish that an individual is not qualified or poses a direct threat. Whether an individual is qualified must be assessed based on his/her current ability to perform essential job functions. Whether an individual poses a direct threat must be assessed based on the individual's present ability to safely perform the functions of the job, considering a reasonable medical judgment that relies on the most current medical knowledge and/or the best available objective evidence.(28)

    Example A: An agency made a conditional job offer to Alice of a physically demanding and stressful position in a developing country with poor health care facilities. During a post-offer medical examination, Alice disclosed a family medical history of heart disease. Alice does not have heart disease and can perform the essential functions of the job. The agency may not withdraw its conditional job offer based on a fear that Alice may develop heart disease. The decision whether to accept the job is Alice's.(29) : An agency made a conditional job offer to Alice of a physically demanding and stressful position in a developing country with poor health care facilities. During a post-offer medical examination, Alice disclosed a family medical history of heart disease. Alice does not have heart disease and can perform the essential functions of the job. The agency may not withdraw its conditional job offer based on a fear that Alice may develop heart disease. The decision whether to accept the job is Alice's.(29)

    Example B: Alana is a chemist working with toxic and explosive materials on a multi-agency, international project. Scientists from her office routinely are assigned to work overseas with scientists from other countries. Alana is scheduled for assignment to a facility in Asia. She and her supervisor, Jennifer, are friends outside the office and Jennifer knows that several members of Alana's family have died of Huntington's Disease (HD), a degenerative brain disorder for which there is, at present, no effective treatment or cure. Early symptoms include clumsiness, involuntary twitching, and lack of coordination. Alana has not been diagnosed with HD and her current health is excellent. Under the Executive Order, Jennifer could not lawfully refuse to assign Alana to the overseas position because of her family medical history. The decision whether to take the assignment belongs to Alana. In addition, under the Rehabilitation Act, Alana's family medical history would not support the conclusion that she poses a direct threat. (Assuming Alana has told the medical office about her family medical history of HD, department or agency medical personnel may conduct medical evaluations of Alana in the future to diagnose HD, as permitted under the Executive Order and the Rehabilitation Act.) : Alana is a chemist working with toxic and explosive materials on a multi-agency, international project. Scientists from her office routinely are assigned to work overseas with scientists from other countries. Alana is scheduled for assignment to a facility in Asia. She and her supervisor, Jennifer, are friends outside the office and Jennifer knows that several members of Alana's family have died of Huntington's Disease (HD), a degenerative brain disorder for which there is, at present, no effective treatment or cure. Early symptoms include clumsiness, involuntary twitching, and lack of coordination. Alana has not been diagnosed with HD and her current health is excellent. Under the Executive Order, Jennifer could not lawfully refuse to assign Alana to the overseas position because of her family medical history. The decision whether to take the assignment belongs to Alana. In addition, under the Rehabilitation Act, Alana's family medical history would not support the conclusion that she poses a direct threat. (Assuming Alana has told the medical office about her family medical history of HD, department or agency medical personnel may conduct medical evaluations of Alana in the future to diagnose HD, as permitted under the Executive Order and the Rehabilitation Act.)

  7. May a department or agency medical office obtain protected genetic information about an employee who uses genetic or health care services that are provided by the department or agency medical office?

    Yes. The Executive Order provides that if an employee voluntarily uses a department's or agency's genetic or health care services, the department or agency medical office may obtain protected genetic information about the employee.(30) A department or agency must meet several conditions as a predicate for obtaining such protected genetic information.

    First, the employee must have provided the department or agency with prior knowing, voluntary, and written authorization to collect the protected genetic information. Second, such protected genetic information must not be used to discriminate against the employee in violation of the Executive Order. Third, the person who performs the genetic or health care services must not disclose the protected genetic information, except for the following limited administrative purposes:

    • to persons assessing the genetic or health care services program;
    • to persons verifying that services were provided for payment/accounting purposes (although the genetic information itself may not be disclosed); or
    • to persons compiling and analyzing information in anticipation of, or for use in, civil or criminal legal proceedings.

    The Executive Order also states that the department or agency may provide the protected genetic information to the employee who has used the genetic health care services.(31)

    Example A: An agency offered its employees free colon cancer screening. During the screening process, agency medical personnel received prior knowing, voluntary, and written authorization from participating employees to obtain protected genetic information, including prior genetic test results and family medical history from the employees' primary health care providers. One of the agency's employees, Corrine, provided both genetic test information and family medical history showing a strong predisposition for colon cancer. Agency medical personnel would violate the Executive Order if they disclosed any of this information except as strictly limited by the exceptions explained in this Guidance. In addition, the agency would violate the Executive Order if it were to adversely affect Corrine's employment based either on her request for health care services or on the specific genetic information disclosed. : An agency offered its employees free colon cancer screening. During the screening process, agency medical personnel received prior knowing, voluntary, and written authorization from participating employees to obtain protected genetic information, including prior genetic test results and family medical history from the employees' primary health care providers. One of the agency's employees, Corrine, provided both genetic test information and family medical history showing a strong predisposition for colon cancer. Agency medical personnel would violate the Executive Order if they disclosed any of this information except as strictly limited by the exceptions explained in this Guidance. In addition, the agency would violate the Executive Order if it were to adversely affect Corrine's employment based either on her request for health care services or on the specific genetic information disclosed.

  8. May a department or agency get protected genetic information from an employee when it conducts medical research in which the employee is a participant?

    Yes. The Executive Order permits a department or agency to collect protected genetic information about an employee if it complies with the requirements in 45 C.F.R. Part 46, "Protection of Human Subjects." The regulation provides the basic policy of the Department of Health & Human Services concerning the use of human subjects in research.

  9. May a department or agency conduct genetic monitoring of employees?

    Yes, under limited circumstances. The Executive Order allows a department or agency to conduct genetic monitoring of the biological effects of toxic substances in the workplace if all of the following conditions are met:

    • the department or agency has received the employee's prior knowing, voluntary, and written authorization;
    • the department or agency notifies the employee when the results are available, makes any protected genetic information that may have been acquired during the monitoring available to the employee, and tells the employee how to obtain such information;(32)
    • the monitoring conforms to any genetic monitoring regulations that may be promulgated by the Department of Labor; and
    • the department or agency officials, except for the licensed health care professionals involved in the monitoring program, receive results only in aggregate terms that do not disclose the identity of specific employees.(33)
  10. May a department or agency collect protected genetic information for identification purposes?

    Yes. The Executive Order states that a department or agency may collect protected genetic information as a part of a lawful program, the primary purpose of which is to carry out identification, e.g., to identify human remains.(34)

VI. PROCEDURE FOR ASSERTING NONCOMPLIANCE WITH THE EXECUTIVE ORDER

The Executive Order establishes policy and does not "create any right or benefit, substantive or procedural, enforceable at law by a party against the United States, its officers or employees, or any other person."(35) Rather, the Executive Order directs the "head of each department or agency [to] take appropriate action to disseminate [the] policy" and identify a high level official to be responsible for "carrying out" the Order's requirements.(36)

If an individual believes that a department or agency has violated the terms of the Executive Order, it would be appropriate for that individual to inform the department or agency official responsible for implementing the Executive Order, regardless of whether the alleged action also may have violated the Rehabilitation Act. Of course, departments or agencies and individuals may always contact the Commission (Office of Legal Counsel) with any questions or concerns about the Executive Order. Doing so will enable the Commission to fulfill its responsibility for coordinating this policy.

VII. ASSERTING VIOLATIONS OF SECTION 501 OF THE REHABILITATION ACT

Applicants and employees in the Executive branch who believe that a department or agency has violated a provision of the Executive Order may be able to pursue a claim under the Rehabilitation Act. To successfully assert coverage under the Rehabilitation Act, applicants and employees first must establish that they meet the definition of an individual with a disability.(37)

  1. Can an individual be regarded as having a disability based on information obtained from a genetic test or family medical history?

    Yes. An employer using information obtained from a genetic test may be "regarding" the individual tested as having an impairment that substantially limits a major life activity. The "regarded as," or third prong, of the definition of disability, protects an individual who does not have an actual disability (first prong) or a record of a disability (second prong). A person who falls solely within the "regarded as" prong of the definition is one:

    • who has an impairment that is not substantially limiting but is treated as substantially limiting;
    • whose impairment is substantially limiting only because of the attitudes of others; or
    • who has no impairment but is treated as having a substantially limiting impairment.(38)

    The "regarded as" prong of the definition of disability is intended to combat the stigmatization of persons with disabilities as well as discrimination based on the myths, fears, and stereotypes associated with disability.(39) The Supreme Court has noted that generalized "'myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairments.'"(40)

    In its Compliance Manual chapter on the definition of the term "disability," the Commission included an example in which an employer withdraws a job offer after learning that the applicant has a genetic profile indicating an increased risk for colon cancer. The employer has concerns about productivity, attendance, and health insurance costs. This employer is treating the individual as substantially limited in a major life activity and the individual is covered under the "regarded as" prong of the definition of disability.(41)

    An individual with a family medical history of a disease, medical condition or disorder, also may be covered under the "regarded as" prong of the definition of disability. A department or agency that makes an adverse employment decision because of family medical history may be treating an individual with no known impairments as having an impairment that substantially limits a major life activity.

    Example A: Jane and her supervisor, Jim, were chatting one day about great baseball players when Jim started talking about Lou Gehrig. Jane mentioned that her father died of "Lou Gehrig's Disease," or amyotrophic lateral sclerosis (ALS), and that her brother recently had been diagnosed with it. When a new slot opened in Jim's unit for a manager, he decided not to select Jane because the job required a lot of training and Jim was deeply concerned that Jane would not work long enough in the job to justify the training. Jim expected Jane would have future absences and limited productivity associated with ALS. Jane is not impaired by ALS, but Jim is regarding her as having an impairment that substantially limits the major life activity of working.(42) : Jane and her supervisor, Jim, were chatting one day about great baseball players when Jim started talking about Lou Gehrig. Jane mentioned that her father died of "Lou Gehrig's Disease," or amyotrophic lateral sclerosis (ALS), and that her brother recently had been diagnosed with it. When a new slot opened in Jim's unit for a manager, he decided not to select Jane because the job required a lot of training and Jim was deeply concerned that Jane would not work long enough in the job to justify the training. Jim expected Jane would have future absences and limited productivity associated with ALS. Jane is not impaired by ALS, but Jim is regarding her as having an impairment that substantially limits the major life activity of working.(42)

    Generalized fears regarding productivity, attendance, safety, liability, accommodation, acceptance by co-workers, and a limited work life may relate to all jobs, and thus may reflect an assumption that the individual is precluded from performing either a class of jobs or broad range of jobs in various classes, and therefore is substantially limited in the major life activity of working.

  2. Can an individual with a misspelled or altered gene associated with a severe disease or disorder (43) be covered under the actual disability prong of the definition of disability under the Rehabilitation Act?

    Yes, in limited circumstances.

    An individual with a misspelled or altered gene associated with a severe or fatal disease or disorder may be covered under the actual disability, or first prong of the definition of disability, which protects an individual who has an impairment that substantially limits a major life activity.

    Under the Rehabilitation Act, the term "impairment" includes "any physiological disorder."(44) An alteration or a misspelling in a gene is an "impairment" because it causes cellular and molecular changes leading to disturbances in cell function.

    An impairment must substantially limit a major life activity in order to rise to the level of a disability. In Bragdon v. Abbott, the Supreme Court held that reproduction is a major life activity.(45) The Court further reasoned that an individual with an impairment that may be transmitted to offspring, and cause a severe or fatal disease or disorder, could be substantially limited in the major life activity of reproduction. Similarly, an individual who has a misspelled or altered gene associated with a severe or fatal disease or disorder, and who could transmit that altered gene to offspring, may have a disability.

    Example A: Fletcher recently tested positive for the genetic alteration that causes Huntington's disease, a degenerative brain disorder. Fletcher currently has no symptoms of the disease. As someone who has the genetic alteration that causes Huntington's, Fletcher has a 50% chance of passing the altered gene to a child. Fletcher would be covered by the first prong of the definition of disability if his impairment, an alteration to the Huntington's gene, substantially limits him in the major life activity of reproduction. : Fletcher recently tested positive for the genetic alteration that causes Huntington's disease, a degenerative brain disorder. Fletcher currently has no symptoms of the disease. As someone who has the genetic alteration that causes Huntington's, Fletcher has a 50% chance of passing the altered gene to a child. Fletcher would be covered by the first prong of the definition of disability if his impairment, an alteration to the Huntington's gene, substantially limits him in the major life activity of reproduction.

  3. Is an individual who has an association with a person who has a disability caused by a genetic impairment protected under the Rehabilitation Act?

    Yes. The Rehabilitation Act prohibits discrimination against an individual based on that person's association with an individual with a disability.(46) This provision protects an individual where the individual "is known to have a family, business, social, or other relationship or association" with an individual with a disability.(47) This is true whether the disability is caused by a genetic impairment or another reason.

    Example A: Rosemarie mentions to her supervisor, Antoine, that her aunt has been diagnosed with Alzheimer's Disease and will be coming to live with her because she no longer can care for herself. Antoine decides not to place Rosemarie into a training program because he believes that she will not be available full time for the foreseeable future because of her aunt's illness. Antoine's action violates the Rehabilitation Act because he is discriminating against Rosemarie based on her association with an individual (her aunt) who has a disability. : Rosemarie mentions to her supervisor, Antoine, that her aunt has been diagnosed with Alzheimer's Disease and will be coming to live with her because she no longer can care for herself. Antoine decides not to place Rosemarie into a training program because he believes that she will not be available full time for the foreseeable future because of her aunt's illness. Antoine's action violates the Rehabilitation Act because he is discriminating against Rosemarie based on her association with an individual (her aunt) who has a disability.

  4. What is the procedure for alleging a violation of section 501 of the Rehabilitation Act?

    The procedure for bringing an action alleging a violation of section 501 of the Rehabilitation Act is set forth in the Commission's federal sector EEO process regulations.(48) Briefly stated, the federal sector process requires the following:

    • the individual alleging discrimination must contact an EEO Counselor within forty-five days of the date of the discriminatory act or within forty-five days of when the individual became aware or should have become aware of the allegedly illegal conduct;
    • the department or agency may conduct EEO counseling or offer mediation or other form of alternative dispute resolution;
    • if the matter is not resolved informally, the agency will give the individual a notice of final interview and the individual will have fifteen days to file a formal complaint;
    • once the formal complaint is filed, the matter will be investigated, and the matter may proceed either to an agency decision or a hearing before a Commission Administrative Judge; and
    • after either the Administrative Judge or the department or agency issues a decision, the matter may be appealed to the EEOC, which will then render a decision.

    At various stages of the process, the complainant has the option of filing a complaint in federal court.(49)


1. Exec. Order No. 13,145, 65 Fed. Reg. 6,877 (2000).

2. The text of President Clinton's remarks at the signing ceremony for the Executive Order may be found at <www.pub.whitehouse.gov/uri-res/I2R?urn:pdi://oma.eop.gov.us/2000/2/8/7.text.2> (visited July 7, 2000).

3. Section 1-103, Exec. Order No. 13,145, 65 Fed. Reg. at 6,877.

4. 29 U.S.C. 791.

5. Rehabilitation Act Amendments of 1992, Pub. L. No. 102-569, 503(b), 106 Stat. 4344 (1992) (codified as amended at 29 U.S.C. 791(g) (1994)). These amendments also apply sections 501-504 and 510 of the ADA to employment discrimination complaints under section 501 of the Rehabilitation Act.

6. Sections 1-102, 1-201(a), 65 Fed. Reg. at 6,877. The term "employee" includes applicants, current employees, and former employees.

7. Id. 1-201(e)(1)(A) - (C), 65 Fed. Reg. at 6,878.

8. Id. 1-201(d). Genes are sections of "DNA" (or "deoxyribonucleic acid") that direct the production of proteins needed for basic cell function. Each gene, in essence, provides the recipe for making a protein within a cell. See Matt Ridley, Genome: The Autobiography of a Species in Twenty-Three Chapters 12-13 (1999). DNA is a long, coiled, double-stranded chain (called a "double-helix") of chemical base pairs that carry genetic information. See Nat'l Cancer Inst., U.S. Dep't of Health and Human Servs., Understanding Gene Testing 1-2 (1995) The base pairs are either an A-T or C-G combination; that is, adenine always pairs with thymine and cytosine always combines with guanine. A mutation, or alteration to a gene, is a variation in the "spelling" of a gene that will cause the cell to not work properly. Id. at 3-4. The booklet Understanding Gene Testing, is available on-line <http://www.accessexcellence.org/AE/AEPC/NIH/index.html> (visited July 13, 2000). Another web-based source of basic genetic information is located at "Geneinfo: Understanding News about Human Genetics," <http://www.geocities.com/geneinfo/index.html> (visited July 13, 2000).

9. Section 1-201(e)(2), Exec. Order No. 13,145, 65 Fed. Reg. at 6,878.

10. Id.

11. Disability-related inquiries and medical examinations are permitted under the Rehabilitation Act for post-offer applicants. For employees, inquiries and examinations are permitted if they are job-related and consistent with business necessity. 29 U.S.C. 12112(d); 29 C.F.R. 1630.14. The Office of Personnel Management (OPM) also regulates when a department or agency may request or require medical examinations of applicants and employees. See 5 U.S.C. 3301 & 3302; 5 C.F.R. Part 339 (Medical Qualification Determination). OPM regulations note, however, that actions taken under Part 339 must be consistent with the Commission's disability discrimination regulations. Id. 339.103.

12. Section 1-201(b), Exec. Order No. 13,145, 65 Fed. Reg. at 6,877.

13. Id. 1-201(c).

14. Id. 1-202(a) - (e), 1-301(a), 65 Fed. Reg. at 6,878-79.

15. Id. 1-202(e), 65 Fed. Reg. at 6,879.

16. 29 C.F.R. 1630.14(b)(1) & (c)(1).

17. Section 1-202(d)(1) - (4), Exec. Order No. 13,145, 65 Fed. Reg. at 6,878

18. If disclosure is sought in response to a court order or congressional subpoena that was secured without the employee's knowledge, the employee should be given the opportunity to challenge the disclosure before it is made, unless the subpoena or order imposes a confidentiality requirement. Id. 1-202(d)(3).

19. The Rehabilitation Act permits disclosure of medical information, including protected genetic information, under limited exceptions to its confidentiality requirements. These exceptions include:

  • supervisors and managers may be told about necessary restrictions on the work or duties of the employee and about necessary accommodations;
  • first aid and safety personnel may be told if the disability might require emergency treatment;
  • government officials investigating compliance with the Rehabilitation Act must be given relevant information on request;
  • employers may give information to state workers' compensation offices, state second injury funds, or workers' compensation insurance carriers in accordance with state workers' compensation laws; and
  • employers may use the information for insurance purposes.

Enforcement Guidance: Preemployment Disability-Related Questions and Medical Examinations 21, 8 FEP Man. (BNA) 405:7191, 7201 (1995). Unions also may have limited access to medical information for reasonable accommodation purposes. See EEOC: Opinion Letter on ADA Confidentiality Requirement and Union Rights, 8 FEP Man. (BNA) 405:7527, 7529 (1996).

20. Section 1-301(a)(1), Exec. Order No. 13,145, 65 Fed. Reg. at 6,879. For another applicable regulation, see, e.g., 5 C.F.R. Part 339 (Medical Qualification Determinations).

21. Under the Rehabilitation Act, if a department or agency chooses to condition a job offer on the results of a medical examination, it must ensure that all post-offer applicants in the same job category are subjected to the same examination. 29 C.F.R. 1630.14(b). A department or agency thus would have to request or require family medical history from all post-offer applicants to the same position.

22. Section 1-301(a)(1) - (4), Exec Order No. 13,145, 65 Fed. Reg. at 6,879.

23. 29 C.F.R. 1630.14(c) (1999).

24. See EEOC Enforcement Guidance: The Americans with Disabilities Act and Psychiatric Disabilities 15, 8 FEP Man. (BNA) 405:7461, 7468-69 (1997).

25. Section 1-301(a)(1) - (4), Exec. Order No. 13,145, 65 Fed. Reg. at 6,879.

26. The Executive Order imposes the same first condition on departments and agencies requesting family medical history from applicants and employees - compliance with the Rehabilitation Act and other applicable law. Because the Rehabilitation Act itself has different standards for applicant and employee disability-related inquiries, the basis for requesting or requiring family medical history differs as between applicants and employees.

27. Sending Delaine to the medical office is permissible under the Rehabilitation Act because the agency has a reasonable belief based on objective evidence that Delaine's ability to perform an essential function of his job is impaired by a medical condition.

28. 29 C.F.R. 1630.2(r) (1999). For a department or agency to show that an individual poses a direct threat, it must demonstrate that the individual poses a significant risk of substantial harm. 29 C.F.R. app. 1630.2(r) (1999).

29. If Alice develops heart disease and needs treatment, the department or agency must treat her as it would any other employee who develops a similar need during an overseas posting. If the department or agency as a matter of course, or as required by law or regulation, transports an employee who becomes ill to a location with appropriate health care facilities, it must do the same for Alice, even though she had a family medical history of the illness.

30. Id. 1-301(b), 65 Fed. Reg. at 6,879.

31. Id. This section of the Executive Order also allows disclosure for the purposes listed in section 1-202(d), which are noted in this Guidance at Section IV, Prohibitions Under the Executive Order - Disclosure of Protected Genetic Information.

32. The employee must be informed of the process for getting the information the department or agency collects and has the right to decide whether s/he wants the information. An employee's decision not to request the results of the monitoring from his/her employer does not affect the employer's right to engage in monitoring. Id. 1-301(d), 65 Fed. Reg. at 6,879-80.

33. Id.

34. Id. 1-301(e)(3), 65 Fed. Reg. at 6,880.

35. Id. 1-403.

36. Id. 1-401.

37. 29 U.S.C. 12102(2); 29 C.F.R. 1630.2(g) (1999).

38. 29 C.F.R. 1630.2(l) (1999).

39. See H.R. Rep. No. 101-485, pt. 2 at 31-32 (1990).

40. Sutton v. United Air Lines, Inc., 527 U.S. 471, 489 (1999) (quoting School Bd. of Nassau Cty. v. Arline, 480 U.S. 273, 284 (1987)).

41. EEOC Compliance Manual 902.8(a), 8 FEP Man. (BNA) 405:7251, 7278-86 (1995).

42. See generally Heyman v. Queens Village Community, 198 F.3d 68 (2d Cir. 1999). In reversing summary judgment for the employer, the court noted that a jury reasonably could find that the employer regarded the plaintiff as disabled based on its prior experience with an employee who had the same type of cancer as the plaintiff, who needed time off from work, and who was unable to complete his tasks. The court stated, "A jury could find that defendants' experience . . . led [them] to conclude that [plaintiff], afflicted with the same disease, would likewise be unable to function fully and soon would become a workplace liability." Id. at 73. Cf. Koshinski v. Decatur Foundry, Inc., 177 F.3d 599, 603 (7th Cir. 1999) ("It would be hard to imagine . . . that a court would sanction an employer's decision to fire a qualified employee simply because his degenerative heart disease makes a future heart attack inevitable").

43. See supra note 8 explaining that a mutation, or an alteration to a gene, is a variation in the "spelling" of a gene that will cause the cell to not work properly. See Nat'l Cancer Inst., U.S. Dep't of Health and Human Servs., Understanding Gene Testing 3-4 (1995).

44. 29 C.F.R. 1630.2(h)(1).

45. 524 U.S. 624, 640-41 (1998).

46. See Polifko v. Office of Personnel Mgmt., EEOC Request 05940611 (January 4, 1995);

29 C.F.R. 1630.8 (1999).

47. Id.

48. 29 C.F.R. Part 1614 (1999), as amended by 64 Fed. Reg. 37,644 (1999).

49. A more detailed description of the federal sector equal employment opportunity process and links to the applicable regulations may be found at the Commission's web site, http://www.eeoc.gov (see "Federal Sector Information"). Additional information also is available by calling the EEOC information line at 1-800-669-4000 (TDD 1-800-669-6820).

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