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.

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Photo of Joseph J. Lazzarotti Joseph J. Lazzarotti

Joseph J. Lazzarotti is a principal in the Berkeley Heights, New Jersey, office of Jackson Lewis P.C. He founded and currently co-leads the firm’s Privacy, Data and Cybersecurity practice group, edits the firm’s Privacy Blog, and is a Certified Information Privacy Professional (CIPP)…

Joseph J. Lazzarotti is a principal in the Berkeley Heights, New Jersey, office of Jackson Lewis P.C. He founded and currently co-leads the firm’s Privacy, Data and Cybersecurity practice group, edits the firm’s Privacy Blog, and is a Certified Information Privacy Professional (CIPP) with the International Association of Privacy Professionals. Trained as an employee benefits lawyer, focused on compliance, Joe also is a member of the firm’s Employee Benefits practice group.

In short, his practice focuses on the matrix of laws governing the privacy, security, and management of data, as well as the impact and regulation of social media. He also counsels companies on compliance, fiduciary, taxation, and administrative matters with respect to employee benefit plans.

Privacy and cybersecurity experience – Joe counsels multinational, national and regional companies in all industries on the broad array of laws, regulations, best practices, and preventive safeguards. The following are examples of areas of focus in his practice:

  • Advising health care providers, business associates, and group health plan sponsors concerning HIPAA/HITECH compliance, including risk assessments, policies and procedures, incident response plan development, vendor assessment and management programs, and training.
  • Coached hundreds of companies through the investigation, remediation, notification, and overall response to data breaches of all kinds – PHI, PII, payment card, etc.
  • Helping organizations address questions about the application, implementation, and overall compliance with European Union’s General Data Protection Regulation (GDPR) and, in particular, its implications in the U.S., together with preparing for the California Consumer Privacy Act.
  • Working with organizations to develop and implement video, audio, and data-driven monitoring and surveillance programs. For instance, in the transportation and related industries, Joe has worked with numerous clients on fleet management programs involving the use of telematics, dash-cams, event data recorders (EDR), and related technologies. He also has advised many clients in the use of biometrics including with regard to consent, data security, and retention issues under BIPA and other laws.
  • Assisting clients with growing state data security mandates to safeguard personal information, including steering clients through detailed risk assessments and converting those assessments into practical “best practice” risk management solutions, including written information security programs (WISPs). Related work includes compliance advice concerning FTC Act, Regulation S-P, GLBA, and New York Reg. 500.
  • Advising clients about best practices for electronic communications, including in social media, as well as when communicating under a “bring your own device” (BYOD) or “company owned personally enabled device” (COPE) environment.
  • Conducting various levels of privacy and data security training for executives and employees
  • Supports organizations through mergers, acquisitions, and reorganizations with regard to the handling of employee and customer data, and the safeguarding of that data during the transaction.
  • Representing organizations in matters involving inquiries into privacy and data security compliance before federal and state agencies including the HHS Office of Civil Rights, Federal Trade Commission, and various state Attorneys General.

Benefits counseling experience – Joe’s work in the benefits counseling area covers many areas of employee benefits law. Below are some examples of that work:

  • As part of the Firm’s Health Care Reform Team, he advises employers and plan sponsors regarding the establishment, administration and operation of fully insured and self-funded health and welfare plans to comply with ERISA, IRC, ACA/PPACA, HIPAA, COBRA, ADA, GINA, and other related laws.
  • Guiding clients through the selection of plan service providers, along with negotiating service agreements with vendors to address plan compliance and operations, while leveraging data security experience to ensure plan data is safeguarded.
  • Counsels plan sponsors on day-to-day compliance and administrative issues affecting plans.
  • Assists in the design and drafting of benefit plan documents, including severance and fringe benefit plans.
  • Advises plan sponsors concerning employee benefit plan operation, administration and correcting errors in operation.

Joe speaks and writes regularly on current employee benefits and data privacy and cybersecurity topics and his work has been published in leading business and legal journals and media outlets, such as The Washington Post, Inside Counsel, Bloomberg, The National Law Journal, Financial Times, Business Insurance, HR Magazine and NPR, as well as the ABA Journal, The American Lawyer, Law360, Bender’s Labor and Employment Bulletin, the Australian Privacy Law Bulletin and the Privacy, and Data Security Law Journal.

Joe served as a judicial law clerk for the Honorable Laura Denvir Stith on the Missouri Court of Appeals.

Photo of Jody Kahn Mason Jody Kahn Mason

Jody Kahn Mason is a Principal in the Chicago, Illinois, office of Jackson Lewis P.C. and is a contributor to the Disability, Leave & Health Management Blog. She is an experienced employment law litigator and defends employers before federal and state courts and…

Jody Kahn Mason is a Principal in the Chicago, Illinois, office of Jackson Lewis P.C. and is a contributor to the Disability, Leave & Health Management Blog. She is an experienced employment law litigator and defends employers before federal and state courts and administrative agencies throughout the Midwest.  She also regularly provides advice and counsel to clients regarding challenges relating to the implementation of the ADA, FMLA, and similar state and local laws.

Learn more about Ms. Mason on the Jackson Lewis website.