Enacted in 2008, the Illinois Biometric Information Privacy Act, 740 ILCS 14 et seq. (the “BIPA”), went largely unnoticed until a few years ago when a handful of cases sparked a flood of class action litigation over the collection, use, storage, and disclosure of biometric information. Seeing thousands of class action lawsuits, organizations have reevaluated and redoubled their compliance efforts. On January 28, 2021, a complaint was filed in Cook County, IL, Melvin v. Sequencing, LLC, alleging violations of the Illinois Genetic Information Privacy Act, 410 ILCS 513/1 – the “GIPA”…try not to get confused… which was originally effective in 1998.

Will the GIPA follow the BIPA?

The GIPA creates a private right of action using the same language as the BIPA:

Any person aggrieved by a violation of this Act shall have a right of action in a State circuit court or as a supplemental claim in a federal district court against an offending party.

However, while the BIPA provides for liquidated damages of $1,000 for each negligent violation and $5,000 for each intentional or reckless violation (or actual damages, if greater), the liquidated damages provisions under the GIPA are significantly higher: $2,000 and $15,000, respectively. If the holding of the Illinois Supreme Court in Rosenbach v. Six Flags Entertainment Corp., No. 123186 (Ill. Jan. 25, 2019) with regard to the BIPA is applied to the GIPA, plaintiffs could potentially maintain a cause of action and seek liquidated damages resulting from alleged violations of the GIPA, without any showing of actual injury beyond his or her rights under the Act.

Of note, in Sekura v. Krishna Schaumburg Tan, Inc., 2018 IL App (1st 180175), the Illinois Appellate Court for the First Judicial District noted, in a pre-Rosenbach BIPA case, that the GIPA “provide[s] for a substantially identical, ‘any person aggrieved’ right of recovery” as the BIPA.  The First District noted that the GIPA was considered and amended during the same legislative session when the BIPA was passed, suggesting that the legislature intended a similar framework to apply to both statutes.

So, what are some of the requirements of the GIPA?

The GIPA is largely based on the federal Genetic Information Nondiscrimination Act (the “GINA”) and incorporates several terms and concepts from the Privacy Rule under the Health Insurance Portability and Accountability Act (the “HIPAA”). This includes the definition of the term “genetic information” which is defined under HIPAA Reg. 45 CFR 160.103 and includes the manifestation disease in a family member, which includes one’s spouse. GIPA also includes requirements applicable to genetic testing companies, health care providers, business associates, insurers, and employers.

While not an exhaustive list of requirements, in general, under GIPA:

  • Genetic testing and information derived from genetic testing is confidential and privileged and may be released only to the individual tested and to persons specifically authorized, in writing in accordance with Section 30 of GIPA, by that individual to receive the information.
  • An insurer may not seek information derived from genetic testing for use in connection with a policy of accident and health insurance.
  • An insurer shall not use or disclose protected health information that is genetic information for underwriting purposes. Examples of “underwriting purposes” include: (i) determining eligibility (including enrollment and continued eligibility) for benefits under the plan, coverage, or policy (including changes in deductibles or other cost-sharing mechanisms in return for activities such as completing a health risk assessment or participating in a wellness program), (ii) the computation of premium or contribution amounts under the plan, coverage, or policy (including discounts in return for activities, such as completing a health risk assessment or participating in a wellness program); and (iii) other activities related to the creation, renewal, or replacement of a contract of health insurance or health benefits.
  • Companies providing direct-to-consumer commercial genetic testing are prohibited from sharing any genetic test information or other personally identifiable information about a consumer with any health or life insurance company without written consent from the consumer.
  • Employers must treat genetic testing and genetic information consistent with the requirements of federal law, including but not limited to the GINA, the Americans with Disabilities Act, Title VII of the Civil Rights Act of 1964, the Family and Medical Leave Act of 1993, the Occupational Safety and Health Act of 1970, and certain other laws.
  • Employers may permit the disclosure of genetic testing information only in accordance with the GIPA.
  • Employers may not (i) solicit, request, require or purchase genetic testing or genetic information of a person or a family member of the person, or administer a genetic test to a person or a family member of the person as a condition of employment; (ii) affect the terms, conditions, or privileges of employment, or terminate the employment of any person because of genetic testing or genetic information with respect to the employee or family member; or (iii) retaliate against any person alleging a violation of this Act or participating in any manner in a proceeding under the GIPA.
  • Employers cannot use genetic information or genetic testing for workplace wellness programs benefiting employees unless (1) health or genetic services are offered by the employer, (2) the employee provides written authorization in accordance with the GIPA, (3) only the employee (or family member if the family member is receiving genetic services) and the licensed health care professional or licensed genetic counselor involved in providing such services receive individually identifiable information concerning the results of such services, and (4) any individually identifiable information is only available for purposes of such services and shall not be disclosed to the employer except in aggregate terms that do not disclose the identity of specific employees. Employers can not penalize employees who do not disclose their genetic information or choose not to participate in a program requiring disclosure of the employee’s genetic information.

Whether an organization is a health care provider, a genetic testing companies, an employer, or other company subject to the GIPA, it should review its policies and practices concerning genetic tests and genetic information. In Melvin v. Sequencing, LLC, the plaintiff alleges his genetic information was disclosed without his authorization. Based on our preliminary research we could find no other cases addressing violations of the GIPA, so this may be a sign of more to come.  Note also that Illinois is not the only state with laws protecting genetic information.