by Attorney Leslie Lockard
The Law Office of Leslie Lockard, P.C.
P.O. Box 537
Walpole, MA 02081
Tel. 508 850-9800
FAX 508 850-9801
Email: Llockard@leslielockard.com
Website: www.LeslieLockard.com

The US Equal Employment Opportunity Commission (EEOC) recently issued a comprehensive set of regulations arising from the Genetic Information Nondiscrimination Act (GINA). These regulations expand and explain employer non-discrimination obligations in relation to employee genetic information. The regulations apply to most employers who have 15 or more employees for each working day in each of twenty or more calendar weeks in the current or preceding calendar year. The effective date of the regulations is January 10, 2011. In the text below, I have placed in bold type requirements on which employers will need to take a specific action, such as adding text to a form or modifying a practice or procedure, to be in compliance with these regulations. There is a similar Massachusetts state law which applies to employers of six or more employees, which will be summarized at the end of this article.

"Genetic information” is defined in the new federal regulations as information about:

  1. genetic tests of employees or their family members (“Family member” is defined broadly, and is not confined to only immediate or blood family);
  2. family medical history ( defined as information about the manifestation of a disease or disorder in employees’ family members);
  3. an employee’s request for or receipt of genetic services; or
  4. genetic information of a fetus carried by an employee or a family member.

“Genetic tests” include but are not limited to:

  • tests to determine predisposition to breast or colon cancer or Huntington’s disease;
  • carrier screening for adults using genetic analysis to determine the risk of conditions such as cystic fibrosis, sickle cell anemia, spinal muscular atrophy, or fragile X syndrome in future offspring;
  • tests to find genetic abnormalities in fetuses and newborns;
  • pharmacogenetic tests that detect genotypes, mutations or chromosomal changes that indicate how a person will react to a particular drug or drug dosage;
  • DNA testing to detect genetic markers that are associated with information about ancestry, or that reveal family relationships, such as paternity.

  • Tests for the presence of drugs or alcohol are not genetic tests, but a test to determine whether a person has a genetic predisposition for drug or alcohol use is a genetic test.

    Prohibited Practices

    Employers are prohibited from discriminating against employees or applicants on the basis of genetic information in any of the terms, conditions or opportunities of employment, including decisions about health benefits. Employers also cannot limit, classify or segregate employees on the basis of their genetic information. In addition, employers cannot retaliate against people because they have opposed any practice made unlawful by GINA, or assisted in another person’s opposition to such a practice.

    Employers may not request, require or purchase genetic information of any person or of his/her family members. The term “request” as used in this context includes conducting an Internet search on a person in a way that is likely to result in obtaining genetic information; actively listening to third-party conversations or searching a person's personal effects to obtain genetic information; and making requests for information about a person's current health status in a way that is likely to result in obtaining genetic information.

    An employer who inadvertently requests or requires genetic information generally will not be in violation of GINA. However, a request for medical information that produces genetic information will NOT be deemed inadvertent unless the employer directs the person or health care provider from whom it requests medical information not to provide genetic information. The regulations provide specific language for employers to use in requesting medical information. If they use this language, and still receive genetic information in response, their receipt will be deemed inadvertent. Employers will now need to add this language to any request they send out for an employee’s medical information, such as to determine eligibility for Family and Medical or other similar leave based on the employee’s own condition, or to determine whether an employee has a disability or needs reasonable accommodation, or is capable of returning to work. . The approved language reads:

    "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 acquisition of genetic information will also generally be deemed inadvertent if a manger or supervisor obtains genetic information by inadvertently overhearing a workplace conversation, receiving an unsolicited communication such as an e-mail, or asking a casual conversation question such as “How are you?” “Did they catch it early?” “How is your son doing?” However, such an acquisition would be deemed inadvertent only if probing follow up questions are not asked, such as whether the person has been tested for the condition, or whether other family members have the condition.

    An acquisition will be also deemed inadvertent if the manager or supervisor inadvertently learns information from a social media platform which he or she was given permission to access by the creator of the profile. (This would apply, for example, if the supervisor has been given access to a subordinate’s Facebook page, and the subordinate writes on her page that she is raising money for research because her sister has breast cancer).

    There are exceptions which apply when an employer has a wellness program which are too lengthy to detail here.

    Acquisitions of Genetic Information Which are NOT Prohibited

    Among the acquisitions of genetic information which are not prohibited are the following.

    1. An employer may seek information about a family member’s medical history to determine an employee’s eligibility to take FMLA or other similar state or employer-provided leave to care for a sick family member, pursuant to a law or employer policy that requires all employees to provide information about the health condition of the family member to substantiate the need for leave.
    2. An employer does not violate GINA by acquiring genetic information from documents that are commercially and publicly available, such as newspapers, magazines, or books, or through electronic media, such as television, movies, or the internet. For example, if a supervisor reads in a newspaper article that an employee’s sister is genetically prone to breast cancer, this would generally be deemed an inadvertent acquisition. However, this exception does not apply if such materials were viewed with the specific intent of obtaining genetic information.

    The exception also does not apply:

    • To medical databases, court records, or research databases available to scientists on a restricted basis;
    • To genetic information acquired through sources with limited access, such as social networking sites and other media sources which require permission for access from a specific person, or where access is conditioned on membership in a particular group, unless access is routinely granted to all who request it;
    • To genetic information obtained through media sources, whether or not commercially and publicly available, that are likely to provide genetic information, such as Web sites and on-line discussion groups that focus on issues like genetic testing and genetic discrimination.

    Other Employer Requirements

    Employers must tell health care providers not to collect genetic information, including family medical history, as part of medical examinations intended to determine ability to perform a job. If the health care provider fails to heed this instruction, the employer must take reasonable measures, up to and including no longer using him or her to perform such examinations.

    Employers must keep any written genetic information it receives (whether the information is kept in electronic files or paper files) in a confidential medical record file maintained separately from personnel files. This can be the same file in which the employer keeps confidential medical information it obtains about disabilities.

    Genetic information that had been placed in personnel files before November 21, 2009 (the effective date of GINA) need not be removed, but cannot be used to discriminate. (If you come across such information in a file, however, it would usually be advisable to remove it, to minimize the likelihood of a claim that an unfavorable employment decision was motivated by it).

    Employers generally are not permitted to disclose genetic information they have obtained. Among the exceptions to this rule are that a disclosure may be made:

    1. To the employee (or family member if the family member is receiving the genetic services) about whom the information pertains, upon receipt of the employee's or member's written request.
    2. In response to a court order, except only the genetic information expressly authorized by such order may be disclosed; and if the court order was obtained without the knowledge of the employee , the employer must inform the employee of the court order and any genetic information that was disclosed pursuant to the order. (It would generally be wisest to inform the employee before complying with the court order so that the employee has the opportunity to seek legal redress to prevent the disclosure).
    3. To government officials investigating compliance with GINA, if the information is relevant to their investigation
    4. To the extent that a disclosure is made in support of an employee's compliance with the certification provisions of the FMLA or a state family and medical leave law;
    5. To a public health agency, but only if the disclosure concerns a manifestation of a contagious disease or disorder relating to a contagious disease that presents an imminent hazard of death or life-threatening illness, provided that the person whose family member is the subject of the disclosure is notified of such disclosure.

    Employers will need to train supervisors and managers to be aware of these new requirements and to follow them correctly. They should also modify their written equal employment opportunity policies to include prohibitions against genetic information, and will also need to modify any other relevant policies and procedures to reflect these new requirements. The Massachusetts State Genetic Discrimination Law

    There is also a state genetic information discrimination law, which applies to employers who employ six or more employees. About the state law, the Massachusetts Commission Against Discrimination has written the following:

    "Genetic information" is any written, recorded individually identifiable result of a genetic test or explanation of such a result or family history pertaining to the presence, absence, variation, alteration, or modification of a human gene or genes.

    The purpose of this law is to protect individuals' right to keep genetic test results private, and ensures that genetic information will not be used to a person's disadvantage by insurance companies or employers. The law prohibits disclosure of genetic test results without the individual's consent, any requirement of genetic test results as a condition of employment or insurance, and discrimination by insurance companies based on genetic test results….

    Employers are forbidden to use genetic information in making decisions relating to an employee or prospective employee. Employers may not require or induce disclosure of genetic information or submission to testing. Employers who require employees to undergo medical examination should confirm that the medical examination does not require the disclosure of genetic information. Employers should ensure that genetic information is not inadvertently provided to them, and that no employee's file includes genetic information of any kind.


    • to base employment decisions on genetic information (such as hiring or firing)
    • to use the results of a genetic test or genetic information to affect the terms, conditions, compensation, or privileges of a person's employment
    • to require or request genetic information as a condition of employment
    • to offer an inducement to take a genetic test or disclose genetic information
    • to question a person about previous genetic testing, or genetic information about themselves or family members
    • to seek, receive, or record genetic information


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Contact Info

Attorney Leslie Lockard
The Law Office of Leslie Lockard, P.C.
P.O. Box 537
Walpole, MA 02081
Tel. 508 850-9800
FAX 508 850-9801
Email: Llockard@leslielockard.com
Website: www.LeslieLockard.com