The Surge of Genetic Privacy Lawsuits in Illinois and the Impact of GIPA on Businesses

February 20, 2024

Illinois’ Genetic Information Privacy Act (GIPA) has gained notable attention alongside the Illinois Biometric Information Privacy Act (BIPA), particularly due to an increase in class action lawsuits, reaching 30 cases in 2023. This surge is attributed to several factors, including parallels in the right of action and remedy provisions shared between GIPA and BIPA.

GIPA, designed to address public concerns surrounding genetic testing, echoes the legislative intent of safeguarding against unauthorized disclosure and discriminatory use of genetic test results, aligning itself with the principles of the Health Insurance Portability and Accountability Act (HIPAA).

Section 20 of GIPA focuses on regulating the use of genetic information in the realm of insurance, establishing key provisions:

  • Insurance companies are barred from requesting genetic testing information during the evaluation of individuals for accident and health insurance. If such information is received, it cannot be utilized for nontherapeutic purposes related to the insurance policy, unless specified otherwise.
  • Insurers are prohibited from using or disclosing protected health information that constitutes genetic information for underwriting purposes. This encompasses activities such as determining eligibility, calculating premiums, and applying pre-existing condition exclusions.
  • Insurers may consider the results of genetic testing in connection with accident and health insurance only if the individual voluntarily submits the results, and if the results favor the individual.
  • Insurers in possession of genetic testing information are restricted from releasing it to third parties, except as explicitly specified in the Act.
  • Companies providing direct-to-consumer commercial genetic testing are expressly prohibited from sharing any genetic test information or personally identifiable information about a consumer with any health or life insurance company without written consent from the consumer.

GIPA establishes a private right of action for any person aggrieved by a violation of the Act, allowing for the recovery of damages. A prevailing party may be awarded up to $2,500 for each violation or actual damages for negligent violations, and up to $15,000 or actual damages for intentional or reckless violations. Additionally, GIPA permits the recovery of attorney’s fees, costs, and expert witness fees.

The surge in GIPA class action lawsuits in 2023 can be attributed to factors such as the similarity in the legal provisions between GIPA and BIPA, as well as a significant legal development in the Melvin v. Sequencing, LLC case. On August 3, 2023, the District Court for the Northern District of Illinois approved a class and subclass of plaintiffs, alleging that Sequencing, LLC violated GIPA by disclosing customers’ genetic information to unknown third-party developers without customer consent (Melvin v. Sequencing, LLC, 344 F.R.D. 231, N.D. Ill. 2023).

While the Illinois Biometric Information Privacy Act (BIPA) continues to wield significant influence in class action litigation, the Genetic Information Privacy Act (GIPA) emerges as a crucial regulatory framework for businesses operating in Illinois, particularly in the realm of genetic testing and insurance practices. GIPA, designed to address public concerns and align with HIPAA principles, imposes strict prohibitions on the use and disclosure of genetic information for insurance purposes. The surge in GIPA class action lawsuits in 2023 underscores the increasing importance of compliance with genetic privacy laws. Notably, the Sequencing, LLC case exemplifies the potential legal ramifications for unauthorized disclosure of genetic information, reinforcing the need for businesses to navigate these evolving regulations with diligence and adherence to privacy principles.

For more information on what the implications of BIPA and GIPA could mean for your business, contact the qualified attorneys at Rock, Fusco & Connelly.