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The Genetic Information Nondiscrimination Act (GINA) is an anti-discrimination law that became effective November 21, 2009. It was enacted because of advancements in genetic information and individuals’ concern over losing access to health coverage or employment if insurers or employers have individuals’ genetic information.
It is Title II of GINA that applies to employers and makes it unlawful for an employer to discriminate against an applicant, employee, or former employee on the basis of the genetic information. This includes disparate treatment regarding hiring, discharge, compensation, and other terms, conditions, or privileges of employment. Essentially, employees are protected from adverse employment action on the basis of genetic information much the same way that employees are protected from adverse action on the basis of race, gender, or national origin under Title VII of the Civil Rights Act.
In addition, employers may not request, require, or purchase genetic information except as specifically allowed. This is significant because employers may be requesting genetic information without knowing it. “Genetic information” includes information about the manifestation of a disease or disorder in family members (family medical history). Family medical history arises frequently in the administration of the Family and Medical Leave Act (FMLA).
Much like the other nondiscrimination laws, Title II of GINA applies to employers with 15 or more employees, and is enforced by the Equal Employment Opportunity Commission (EEOC).
Requesting genetic information
As stated above, employers may not request, require, or purchase genetic information except as specifically allowed. This prohibition includes conducting internet searches in a way likely to result in obtaining genetic information, actively listening to third-party conversations, and requesting information about current health status in a way that is likely to result in obtaining genetic information. The regulations also prohibit collecting genetic information as part of a job-related medical examination.
The regulations do provide some exceptions which recognize the legitimate operating needs of employers. These include (among others) obtaining genetic information:
- Inadvertently during a casual conversation;
- As part of a voluntary wellness program;
- As part of a certification for the serious health condition of a family member under the Family and Medical Leave Act or equivalent laws or employer policies; or
- From documents that are publicly available (newspapers, magazines, or internet) but not from medical databases, court records, or social networking sites (certain restrictions apply and this safe harbor may not apply in all situations).
As with medical information, any genetic information is to be treated as confidential, and written records (including electronic files) must be kept separate from personnel files. Regardless of how the information was obtained, it may not be disclosed except as specifically permitted.
Genetic information and the FMLA
The GINA regulations clarify how an employer is to approach genetic information issues associated with the FMLA in three particular situations:
- Disclosure of family medical history as part of a health care provider certification (HCP certification) of a family member’s serious health condition;
- Requests for genetic information as part of a HCP certification of an employee’s own serious health condition; and
- Inadvertent disclosure of family medical history as part of a HCP certification of an employee’s own serious health condition.
First, as discussed above, family medical history is genetic information as it relates to the employee. On the other hand, the FMLA expressly permits an employer to request information about a family member’s serious health condition to determine whether a reason for leave qualifies for family and medical leave. These two actions are contradictory. To deal with the inconsistency, the GINA regulations provide a safe harbor for employers to deal with HCP certification of a family member’s serious health condition. Specifically, the general prohibition against requesting, requiring, or purchasing genetic information does not apply where employers requestfamily medical history to comply with the certification provisions of the FMLA or state or local family and medical leave laws, or pursuant to a policy that permits the use of leave to care for a sick family member that requires all employees to provide information about the health condition of the family member to substantiate the need for leave. Employers must note that this situation is distinguished from requesting genetic information as part of the certification of an employee’s own serious health condition.
Second, the GINA regulations reiterate the statute’s prohibition on requesting, requiring, or purchasing an individual’s genetic information. Consequently, employers are still prohibited from requesting genetic information (including family medical history) about an employee when the employer requests the employee’s HCP certification for the employee’s own serious health condition.
Finally, the GINA regulations recognize that an employer cannot necessarily control how much information a health care provider will provide in response to a certification request. Consequently, there may be situations in the HCP certification process in which employers risk receiving more genetic information than family medical history. For example, an employer may inadvertently receive genetic information when an employee requests leave for his or her own cancer treatments, even though the employee was asked not to provide genetic information. On its face, this could be a violation of GINA. The GINA regulations provide a safe harbor for this issue as well.
Under the safe harbor, employers can protect themselves from risk of violating GINA by letting health care providers know that they do not want to receive genetic information in regard to certifications supporting the need for FMLA leave for an employee’s own serious health condition or a fitness-for-duty certification. The EEOC provided model verbiage employers may use to warn health care 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 employees or their family members. In order 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 family member receiving assistive reproductive services.
When it comes to FMLA leave for a family member, however, employers may want to alter the verbiage to indicate that family medical history is needed if it would make the certification complete and sufficient, as required.
- 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 employees or their family members. In order 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 family member receiving assistive reproductive services. Genetic information does not include the manifestation of a disease or disorder in your patient.
The warning may be provided to a health care provider as a separate document from the certification form; it need not be included on the form.