Title II of the Genetic Information Nondiscrimination Act of 2008 (GINA) protects employees and job applicants from employment discrimination based on genetic information. Title II of GINA prohibits employers (and various employer-like entities and programs) from using genetic information in making any employment decisions — such as firing, hiring, promotions, pay, and job assignments. This law also prohibits employers from requesting or requiring genetic information or genetic testing as a prerequisite for employment.
GINA went into effect on November 21, 2009. The Equal Employment Opportunity Commission (EEOC) enforces Title II of GINA, regarding protections from genetic discrimination in employment. The Departments of Labor, Health and Human Services and the Treasury have responsibility for issuing regulations for Title I of GINA, which addresses the use of genetic information in health insurance.
Genetic Information Defined
Under Title II of GINA, “genetic information” includes any information about an individual's genetic tests and genetic testing of an individual’s family members. Critically, this definition encompasses an individual’s family medical history — i.e. information about diseases or disorders among members of the individual’s family. 42 U.S.C. §2000ff(4). EEOC regulations clarify that GINA’s use of the phrase “manifestation of a disease or disorder in family members” in its definition of “genetic information” refers to an employee's “family medical history,” interpreted in accordance with its normal understanding as used by medical providers. 29 C.F.R. §1635.3(c)(iii).
GINA’s definition of “genetic information” includes family medical history because this kind of information is often used to predict an individual’s risk of future diseases, disorders, or other medical conditions that might theoretically, in the future, impair her ability to work.
Genetic information also includes an individual's request for, or receipt of, genetic services, or the participation in clinical research that includes genetic services by the individual or a family member of the individual. 42 U.S.C. §2000ff(4)(B). Genetic information under GINA also encompasses the genetic information of a fetus carried by an individual or a family member of the individual, and the genetic information of any embryo legally held by the individual or family member using an assisted reproductive technology. See 29 U.S.C. §1182(f).
Discrimination and Harassment on the Basis of Genetic Information
GINA’s basic intent is to prohibit employers from making a “predictive assessment concerning an individual's propensity to get an inheritable genetic disease or disorder based on the occurrence of an inheritable disease or disorder in [a] family member.” H.R.Rep. No. 110–28, pt. 3, at 70 (2007), 2008 U.S.C.C.A.N. 112, 141. Congress therefore included family medical history in the definition of “genetic information” because it understood that employers could potentially use family medical history “as a surrogate for genetic traits.” H.R.Rep. No. 110–28, pt. 1, at 36 (2007), 2008 U.S.C.C.A.N. 66, 80. See Poore v. Peterbilt of Bristol, L.L.C., 852 F. Supp. 2d 727, 730 (W.D. Va. 2012); see also the Final Rule implementing Title II of the Genetic Information Nondiscrimination Act, as published in the Federal Register on November 9, 2010; and the Final Rule on Employer-Sponsored Wellness Programs and Title II of the Genetic Information Nondiscrimination Act, as published in the Federal Register on May 17, 2016.
To prevent employers from treating employees and applicants differently based on assumptions about their genetic traits, GINA prohibits employers from discriminating against an employee or job applicant on the basis of genetic information. This includes hiring, firing, pay, job assignments, promotions, layoffs, training, fringe benefits, or any other term or condition of employment. 42 U.S.C. §2000ff(1)(a).
The rationale for this prohibition makes good sense. Just as Title VII prohibits discrimination on the basis of race, sex, or religion because these characteristics have no bearing on an individual’s ability to work, GINA prohibits employers from using of genetic information in making employment decisions because an individual’s genetic information has no bearing on her current ability to work.
Title II of GINA also prohibits harassment of the basis of genetic information. Harassment is a form of discrimination that does not necessarily involve an adverse employment decision (like a termination or demotion). For example, harassment can include offensive or derogatory remarks about an employee or applicant’s genetic information, or about the genetic information of a family member. A harasser might be a supervisor, a co-worker, or even a non-employee, such as a customer or client. To be considered illegal, the harassing conduct towards an employee or applicant must be either sufficiently pervasive or severe as to create an abusive work environment or must result in an adverse employment decision.
Six Exceptions to the Rule Against Obtaining or Requesting Employee Genetic Information
GINA prohibits employers from using an employee’s genetic information to make any employment decision and further prohibits employers from requesting, requiring, or purchasing genetic information about an applicant or employee. 42 U.S.C. § 2000ff–1(b). However, the law also provides six narrow exceptions to the rule prohibiting an employer from obtaining genetic information about employees. An employer may request, require or purchase genetic information if:
- The information is acquired inadvertently, or accidentally;
- The information is part of a health or genetic service provided by the employer on a voluntary basis, such as a wellness program;
- The information is in the form of a family medical history to comply with the certification requirements of the Family Medical Leave Act (FMLA), state or local leaves laws, or specific employer leave policies;
- The information is from sources that are commercially and publically available, including newspapers, books, magazines, and electronic sources;
- The information is part of genetic monitoring that is either required by law or provided on a voluntary basis; or
- The information can be requested, required, or purchased by employers who conduct DNA testing for law enforcement purposes as a forensic lab or for human remains identification.
See 42 U.S.C. § 2000ff–1(b).
Confidentiality and Disclosure of Genetic Information
If an employer obtains an employee’s genetic information under any of the exceptions, GINA requires that the information be kept confidential. If any of the genetic information is in written form, it must be stored apart from any other personal information in a separate medical file. 42 U.S.C. § 2000ff–5(a). An employer may, however, disclose employee genetic information to third parties under six limited circumstances:
If the employer is disclosing genetic information to the employee or family member about whom the information is regarding upon the written request of the employee or family member;
If the employer is disclosing genetic information to an occupational or another health researcher that is conducting research within federal regulations;
If the employer is disclosing genetic information in response to a court order, except that the covered entity may disclose only the genetic information that is authorized by the order;
If the employer is disclosing genetic information to government officials who are investigating compliance with Title II of GINA, provided the information is relevant to the investigation;
If the employer is disclosing genetic information in accordance with the certification process for FMLA leave or state family and medical leave laws; or
If the employer is disclosing genetic information to a public health agency in regard to information about the manifestation of a disease or a disorder that concerns a contagious illness that presents the imminent potential of death or life-threatening illness.
See 42 U.S.C. § 2000ff–5(b).
Retaliation
Similar to other employment laws, Title II of GINA prohibits any form of retaliation against an individual for opposing employment practices that discriminate on the basis of genetic information, or for participating in proceedings or investigations involving possible GINA violations. This means employers (and other people) may not fire, demote, harass, or otherwise retaliate against an applicant or employee for opposing genetic information discrimination or participating in a GINA proceeding. 42 U.S.C. § 2000ff–6(f).
Remedies
As with other employment and civil rights laws, if an employee prevails in court on a claim that her employer violated GINA, the employee may recover lost wages and other damages, as well as costs and reasonable attorney fees. 42 U.S.C. § 2000ff–6.
For additional information about this law and its history, the National Human Genome Research Institute is a solid resource.
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