This language may prove to be instructive and helpful on the life insurance suits currently being filed against many life insurers, as life insurers generally are not subject to HIPAA. They do have privacy protection obligations, but life insurers are not covered entities under HIPAA. [9]
The 1998 act used the definition of genetic information provided for under the HIPAA,[10] defining genetic information as having “the meaning ascribed to it under HIPAA, as specified in 45 CFR 160.103.”[11] 45 CFR 160.103 provides:
Genetic information means:
(1) Subject to paragraphs (2) and (3) of this definition, with respect to an individual, information about:
(i) The individual's genetic tests;
(ii) The genetic tests of family members of the individual;
(iii) The manifestation of a disease or disorder in family members of such individual; or
(iv) Any request for, or receipt of, genetic services, or participation in clinical research which includes genetic services, by the individual or any family member of the individual.
(2) Any reference in this subchapter to genetic information concerning an individual or family member of an individual shall include the genetic information of:
(i) A fetus carried by the individual or family member who is a pregnant woman; and
(ii) Any embryo legally held by an individual or family member utilizing an assisted reproductive technology.
(3) Genetic information excludes information about the sex or age of any individual.[12]
Section 20: The Heart of the Dispute
At the center of the litigation is Section 20 of GIPA. Subsection (b) provides: “No insurer shall seek information derived from genetic testing for use in connection with a policy of accident and health insurance for underwriting purposes.”[13] By its plain terms, §20(b) applies only to “a policy of accident and health insurance.” Life insurance is not mentioned. Subsection (e), added in 2019, is the statute’s only express reference to life insurance and concerns confidentiality obligations, but not underwriting.[14]
Life insurers therefore argue that §20(b) does not apply to their underwriting practices, while plaintiffs contend that the statute’s broader term 'insurer' should be read to include all lines of insurance.[15] [This dispute over statutory construction has fueled a surge of lawsuits, with plaintiffs urging courts to reinterpret and apply the statute.
GIPA Private Right of Action
GIPA specifically provides for a private right of action and sets forth the categories of damages and other recoveries available:
Sec. 40. Right of action.
(a) 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. A prevailing party may recover for each violation:
(1) Against any party who negligently violates a provision of this Act, liquidated damages of $2,500 or actual damages, whichever is greater.
(2) Against any party who intentionally or recklessly violates a provision of this Act, liquidated damages of $15,000 or actual damages, whichever is greater.
(3) Reasonable attorney's fees and costs, including expert witness fees and other litigation expenses.
(4) Such other relief, including an injunction, as the State or federal court may deem appropriate.
(b) Article XL of the Illinois Insurance Code shall provide the exclusive remedy for violations of Section 30 by insurers.
(c) Notwithstanding any provisions of the law to the contrary, any person alleging a violation of subsection (a) of Section 15, subsection (b) of Section 25, Section 30, Section 31, or Section 35 of this Act shall have a right of action in a State circuit court or as a supplemental claim in a federal district court to seek a preliminary injunction preventing the release or disclosure of genetic testing or genetic information pending the final resolution of any action under this Act. [16]
Suits Filed Under GIPA
In the last year or so, suits have been filed against a number of non-insurance companies, including Amazon, Ford Motor Company, and Ancestry.com. In a 2021 case, Bridges v. Blackstone Inc., plaintiffs sued Blackstone, which purchased Ancestry.com. The plaintiffs had provided DNA to Ancestry before the purchase by Blackstone and alleged that as a result of the transaction, Blackstone had compelled disclosure in violation of GIPA. The 7th Circuit affirmed the district court’s finding that the plaintiffs failed to state a claim, holding that “we cannot plausibly infer that a run-of-the-mill corporate acquisition, without more alleged about that transaction, results in a compulsory disclosure within the meaning of Section 30.”[17] The district court adopted the broad reading of “aggrieved person” that has applied in BIPA, and the 7th Circuit did not upset that part of the district court’s decision.
Emerging Suits Against Life Insurers
Recently, a number of putative class actions have been filed against life insurers doing business in Illinois. Pacific Life Insurance, AIG, State Farm and others have been the targets.[18] The suits allege that GIPA prohibits life insurers from collecting family medical histories from applicants for life insurance to underwrite the policies. Specifically, the suits have language such as the insurer “required plaintiff to disclose his private family medical history as part of their life insurance policy application process.” It is too early to determine whether these suits against life insurers will be successful. If the plaintiffs have any success, this will potentially change the process for applying for some forms of life insurance in the State of Illinois. The language of GIPA may be instructive for now.
The Life Litigation Landscape
One pending state case, Reynolds v. State Farm Life Insurance Co.,[19] appeal pending, saw the trial court dismiss the complaint, holding that §20(b) was limited to accident and health insurance. Meanwhile, federal courts have also weighed in. In Thompson v. Banner Life Insurance Co.,[20], the court dismissed GIPA claims against a life insurer, finding that the statutory text and legislative history excluded life insurance. In related litigation against Prudential, federal judges have similarly declined to extend §20(b) beyond health lines.[21]
Despite these rulings, plaintiffs continue to file class actions alleging that any use of genetic or family health history in underwriting violates GIPA, focusing on application questionnaires that ask about hereditary conditions. The plaintiffs’ bar has framed these claims as privacy-rights issues akin to BIPA litigation, seeking per-violation statutory damages of up to $2,500 for negligent violations and $15,000 for willful violations—figures that could be devastating if applied to large underwriting portfolios.
The ACLI Amicus Brief: Industry's Voice
Recognizing the potential for industry-wide disruption, the American Council of Life Insurers (“ACLI”) filed an amicus curiae brief supporting State Farm. The ACLI represents 275 member companies that collectively account for 95% of industry assets and pay more than $9.5 billion annually in life insurance and annuity benefits to Illinois families.[22]
The ACLI’s brief emphasized that Section 20(b) was never intended to apply to life insurance, and that life insurers’ reliance on health and family medical history is both longstanding and necessary for sound risk classification. The ACLI reviewed the 1997 Senate debates, noting that lawmakers specifically excluded life insurance from §20(b) in response to industry concerns about adverse selection.[23] The 2014 amendment to GIPA, which were designed to harmonize the statute with HIPAA, did not expand §20(b) to cover life insurance.[24] Nor did the Illinois Department of Insurance alter its regulations, which continue to allow family medical history questions on life applications.[25]
Policy Implications: Balancing Fairness and Privacy
From a policy standpoint, expanding GIPA to encompass life insurance would have far-reaching consequences. Without access to relevant family health history, life insurers would face increased uncertainty in assessing risk, leading to higher premiums for low-risk applicants and reduced access to coverage for all consumers. Such a regime could produce adverse selection, undermining the actuarial foundations of the life insurance market.
By contrast, the Genetic Information Nondiscrimination Act (“GINA”),[26] explicitly excludes life insurance, disability insurance, and long-term care insurance from its scope. Congress recognized that these products depend on individualized risk assessment and that their inclusion would destabilize pricing and availability.
Comparative State Frameworks and Emerging Trends
Illinois’s ongoing litigation places it at the center of a growing national dialogue over genetic privacy and insurance underwriting. While the federal GINA sets a baseline by protecting health insurance applicants, many states have adopted their own genetic privacy statutes, often stopping short of applying them to life insurance:
- California, under Cal. Ins. Code § 10140.1 and Cal. Civ. Code § 56.18, prohibits health insurers from using genetic characteristics but allows life insurers to request such information with consent.
- New York’s framework, N.Y. Ins. Law § 2615 and Pub. Health Law § 2795, bars health insurers from requiring genetic tests but permits life insurers to use voluntarily provided data, subject to Department of Financial Services oversight.
- Massachusetts takes a balanced approach under Mass. Gen. Laws ch. 111, § 70G, banning discrimination in health insurance but allowing life insurers to use genetic and family history data so long as access is not unreasonably restricted.
- Oregon allows voluntary disclosure by life insurance applicants under Or. Rev. Stat. § 746.135.
- Washington and Texas limit restrictions to health insurers.
- Florida, by contrast, stands out as the only state that fully prohibits life, disability, and long-term care insurers from using genetic information in underwriting or rate-setting under Fla. Stat. § 627.4301.
Illinois’s ambiguity leaves courts to decide whether life insurance is covered at all. Most states limit their protections to health insurance and do not create private rights of action.
Comparatively, Illinois and Florida represent the two ends of the spectrum: Illinois’s law is vague but litigious, while Florida’s is explicit and restrictive. Other states fall somewhere in between, creating a patchwork of regulatory standards. No other jurisdiction currently faces class actions attempting to extend genetic privacy laws to life insurance, making Illinois the national bellwether for how far privacy litigation can reach into underwriting practices.
Legislative Ambiguity and the Case for Clarification
Both sides of the GIPA debate acknowledge that the statutory language is not a model of clarity. Section 20’s drafting invites potential confusion. Several lawmakers have introduced bills to clarify that GIPA’s underwriting prohibition applies only to accident and health insurance. Industry observers expect this issue to resurface in the 2026 legislative session if appellate decisions remain divided.
Suits Practical Takeaways for Life Insurers
While the litigation remains unresolved, life insurers in Illinois may wish to take several practical steps:
1. Continue established underwriting practices, consistent with Illinois Department of Insurance guidance and historical precedent but monitor active litigation closely.
2. Audit application materials to ensure family-history questions are phrased neutrally and compliant with confidentiality standards.
3. Develop contingency workflows in case an appellate ruling expands GIPA coverage.
4. Engage proactively with trade associations and legislative bodies to educate policymakers.
5. Train staff on handling sensitive genetic information, emphasizing confidentiality and consent.
Conclusion: A Test Case for Privacy and Fairness
The Illinois courts now stand at a crossroads. A broad reading of GIPA §20(b) could redefine the relationship between privacy law and insurance regulation, reshaping life underwriting nationwide. Regardless of the outcome, the cases underscore the importance of legislative clarity in complex regulatory environments. For now, life insurers may continue their longstanding practices while protecting confidentiality, and engage constructively with policymakers. The debate over genetic privacy and risk classification will continue to evolve, testing how we balance fairness, science, and law in the modern insurance marketplace.