Genetic Information Discrimination

What legal protections are there against discrimination in the workplace based on genetic information? The Genetic Information Nondiscrimination Act of 2008 (“GINA”) is intended to provide individuals with legal protection against discrimination based on genetic information in health insurance and employment and prohibits discrimination against employees or applicants because of genetic information. This prohibition includes using genetic information in making employment decisions and prohibits employers, employment agencies, labor organizations, and apprenticeship training funds from requesting genetic information.

What’s the purpose of protecting genetic information? GINA establishes a national and uniform standard to fully protect the public from discrimination and allay concerns of potential discrimination. With this legal protection, individuals can take advantage of genetic testing, technologies, research and new therapies without fear of accompanying discrimination.

What is genetic information? Genetic information is information about an individual’s or the individual’s family’s genetic tests, as well as the manifestation of a disease or disorder in an individual’s family members.

  • The family medical history aspect is included to prevent the use of such information to determine whether someone has an increased risk of a disease, disorder, or condition in the future.
  • Genetic information also includes a request for genetic services, the receipt of that information, or participation in clinical research that includes genetic services by the individual or family member.
  • Genetic information includes the genetic information of a fetus carried by the individual, a fetus carried by a family member, and the genetic information of an embryo legally held by the individual or family member.

What application does GINA have with respect to health insurance eligibility, premiums and contributions? Title I of GINA prohibits health insurers from requiring individuals to provide their genetic information or the genetic information of a family member to an insurer for eligibility, coverage, underwriting, or premium-calculation determinations. However, GINA does not cover the use, acquisition, or disclosure of medical information that is not genetic information about a manifested disease, disorder, or pathological condition of an employee or member, including a manifested disease, disorder or pathological condition that has or may have a genetic basis.

What type of discrimination does GINA prohibit? GINA prohibits discrimination on the basis of genetic information in employment, which includes hiring, firing, pay, job assignments, promotions, layoffs, training, fringe benefits, or any other term and condition of employment. Because genetic information does not impact an individual’s ability to work, the law provides that, without exception, an employer may never use genetic information to make an employment decision.

What about harassment or retaliation based on genetic information? GINA also prohibits harassment because of genetic information and retaliation. It is illegal to take adverse employment action, including firing, demoting, or harassing, for filing a charge of discrimination, participating in a discrimination proceeding, or otherwise opposing discrimination.

When is the acquisition of genetic information unlawful? With certain exceptions, the acquisition of genetic information by an employer is always unlawful. The exceptions include situations where such information is:

  • inadvertently acquired (for example, overhearing the information);
  • received as part of health and wellness program offered on a voluntary basis;
  • received as a part of the certification process for FMLA leave;
  • disclosed in publicly available documents;
  • acquired as a result of workplace monitoring of the biological effects of toxic; substances in the workplace where required by law or voluntary; and
  • acquired as the result of DNA testing for law enforcement purposes.

Does GINA impose an obligation of confidentiality? Yes, once an employer has knowledge of an employee’s genetic information, it may not disclose the information and must store the information in a separate medical file. Exceptions include disclosure of relevant genetic information to government officials investigating compliance or where disclosure is court ordered.

What government agency enforces GINA and what remedies are available for violations? The EEOC has jurisdiction to investigate and enforce GINA. The same remedial procedures for other Title VII protections apply for GINA violations.

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