ABSTRACT: A fresh wave of litigation has recently emerged in Illinois commonly known by the four-letter acronym GIPA—the Genetic Information Privacy Act. In a five-part series of posts, we examine GIPA’s background, key provisions of the Act, the remedies available under GIPA, certain types of GIPA cases being filed, and considerations for companies regarding GIPA litigation.

This week, Baker Sterchi is dedicating this blog to a discussion of the Genetic Information Privacy Act (‘GIPA”). In a five-part series of posts, we examine GIPA’s background, key provisions of the Act, the remedies available under GIPA, certain types of GIPA cases being filed, and considerations for companies regarding GIPA litigation. As discussed yesterday, GIPA affords a private right of action to those “aggrieved” by a violation of the Act.

Today, we examine the types of lawsuits currently being filed under GIPA:

Insurance Cases  

Recently, there has been an increase in GIPA lawsuits against insurers, alleging that the insurers violated GIPA by inquiring into individuals’ family medical histories to determine premiums, underwrite, and determine eligibility.  GIPA suits have been filed against Northwestern Mutual, Mass Mutual, Pacific Life, AIG, and State Farm, among others.  Pursuant to GIPA, an insurer may not seek information derived from genetic testing for use in connection with a policy of accident and health insurance.  410 ILCS 513/20(a).  Additionally, an insurer shall not use or disclose protected health information that is genetic information for underwriting purposes.  410 ILCS 513/20(b).  An insurer that possesses information derived from genetic testing may not release the information to a third party, except as specified in GIPA.  410 ILCS 513/20(d).  An insurer may, however, consider the results of genetic testing in connection with a policy of accident and health insurance if the individual voluntarily submits the results and the results are favorable to the individual.  410 ILCS 513/20(c).

In some of the insurance-based GIPA suits, the plaintiffs are seeking a broad interpretation of the term “genetic information,” such that the term would encompass questions regarding family histories of any condition, not just genetic-related conditions.  The plaintiffs base their theory on the definition of “genetic information.”  As discussed in our Tuesday post, the term “genetic information,” as used in GIPA, has the same meaning as that term is used in HIPPA.  HIPPA defines the term to include “the manifestation of a disease or disorder in family members of such individuals.”  The plaintiffs maintain that this phrase is broad enough to encompass any illness or condition of family members.   

This litigation raises the question of what types of family member diseases and disorders are encompassed by GINA’s definition of “genetic information.”  Specifically, must the diseases and disorders be genetic-based, or does the Act apply to any disease and disorder?  At this point, there are no Illinois court opinions addressing the scope of the family member provision of the term “genetic information” as used in GIPA.  There are, however, court opinions examining the federal Genetic Information Nondiscrimination Act (“GINA”) that may prove helpful on this issue.  GINA prohibits employers from requesting, requiring, or purchasing genetic information with respect to an employee or a family member of the employee.  42 U.S.C. § 2000ff-1(b).  Like GIPA, GINA defines “genetic information” to include information about “genetic tests of family members” and “the manifestation of a disease or disorder in family members.”     

In Willliams v. City of Chicago, the District Court for the Northern District of Illinois found that two plaintiffs alleged sufficient facts to avoid dismissal of their GINA claims.  616 F. Supp. 3d 808 (N.D. Ill. 2022).  The plaintiffs participated in their employer’s wellness program.  In doing so, they were asked to respond to questionnaires about their spouses’ medical histories.  Taking the plaintiffs’ allegations as true and making all reasonable inferences in their favor, the court found the allegations sufficient to find that the plaintiffs provided genetic information under GINA (i.e., their spouses’ medical histories).  In that case, however, the court did not discuss the scope of the employer’s medical questionnaire or otherwise identify the information sought about the plaintiffs’ spouses.

In Ries v. City of Chicago, the plaintiff argued that disclosure of COVID-19 vaccination status constituted a request to disclose the “manifestation of a disease or disorder.”  According to the court, the plaintiff failed to demonstrate that vaccination status had “any bearing on the likelihood of his inheriting a genetic disease or disorder from a family member.”  No. 22 C 2740, 2023 U.S. Dist. LEXIS 166246 (N.D. Ill. Sept. 19, 2023) (emphasis added).  Notably, the court included the term” genetic” in its recitation of the family member component of GINA’s definition of “genetic information.”   

Courts in other jurisdictions have more clearly limited the scope of the family member provision in GINA’s definition of “genetic information.”  For example, the District Court for the Western District of Texas explained that an employer merely acquiring information about an employee’s family medical history “is of no matter” unless the employer uses that information to make a predictive assessment about its employee’s propensity to develop the same disease.  Green v. Whataburger Rests. LLC, No. 5:17-CV-243-DAE, 2018 U.S. Dist. LEXIS 206793 (W.D. Tx. Oct. 9, 2018).  The court reasoned that the purpose of the family medical history provision is to prohibit employers from making a predictive assessment concerning an employee’s propensity to get an inheritable disease or disorder in a family member.  In that case, the only information the plaintiff provided about her family medical history was that her daughter needed surgery due to the possibility of cancer.  The court determined that the fact the plaintiff’s daughter might have cancer had no predictive value with respect to the plaintiff’s propensity to acquire cancer.   

Other courts have determined that for discrimination based on family medical history to violate GINA, the family medical condition must have a genetic predisposition and the employer must have believed that the medical information at issue had a genetic basis.  Dabrowski v. Mayorkas, No. 19-3679 (BAH), 2022 U.S. Dist. LEXIS 42874 (D.C. D. Ct. March 10, 2022).  See also, Baum v. Dunmire Prop. Mgmt., No. 21-cv-00964-CMA-NYW, 2022 U.S. Dist. LEXIS 54555 (D. Colo. March 25, 2022) (plaintiff’s father’s diagnosis of COVID-19 was “not the kind of genetic information contemplated by GINA”); Tedesco v. Pearson Educ., Inc., No. 21-cv-199, 2021 U.S. Dist. LEXIS 105157 (E.D. La. June 4, 2021) (father’s suicide not considered family medical history because the plaintiff failed to establish a causal link between his father’s suicide and genetic makeup); Lee v. City of Moraine Fire Dep’t, No. 3:13-cv-222, 2014 U.S. Dist. LEXIS 77963 (S.D. Ohio May 2, 2014) (the fact that employee’s primary relative had a history of prostate cancer was protected by GINA); Punt v. Kelly Servs., No. 14-cv-2560, 2016 U.S. Dist. LEXIS 1018 (D. Colo. Jan. 6, 2016) (holding the prevalence of breast cancer in the plaintiff’s family to be the type of genetic information implicated by GINA as “the manifestation of a disease or disorder in family members”); Jackson v. Regal Beloit Am., Inc., No. 16-cv-134, 2018 U.S. Dist. LEXIS 103682 (E.D. Ky. June 21, 2018) (family history of colon cancer was “genetic information”); Conner-Goodgame v. Wells Fargo Bank, N.A., No. 2:12-cv-3426, 2013 U.S. Dist. LEXIS 139477 (N.D. Ala. Sept. 26, 2013) (the plaintiff’s mother’s AIDS diagnosis did not constitute genetic information about a manifested disease or disorder); Poore v. Peterbilt of Bristol, L.L.C., No. ???, 2012 U.S. Dist. LEXIS 47114 (W.D. Va. April 4, 2012) (the plaintiff’s disclosure of his wife’s multiple sclerosis diagnosis did not trigger liability under GINA).

Given the dearth of GIPA court opinions on this issue, defendants sued for allegedly violating the family medical history provision of the genetic information definition should determine whether the medical condition at issue has a genetic predisposition.  If not, defendants should consider relying on the cases discussed above to support a motion to dismiss or motion for summary judgment.

For life insurance companies named in GIPA litigation, there is a question of whether they are subject to liability under GIPA’s insurance section, 410 ILCS 513/20.  Section 20(a) applies only to accident and health insurance policies.  Section 20(b) prohibits the use or disclosure of protected health information that is genetic information for underwriting purposes.  GIPA, however, defines “insurers” as 1) an entity that is subject to the jurisdiction of the Director of Insurance; and 2) a managed care plan.  410 ILCS 513/10.  While life insurers are subject to the jurisdiction of the Illinois Director of Insurance, there is an argument they do not constitute a “managed care plan,” as that term is defined in Section 10 of GIPA.  GIPA defines a managed care plan, in part, as a plan that establishes, operates, or maintains a network of health care providers that have entered into agreements with the plan to provide health care services to enrollees.  Additionally, the Illinois legislature introduced a bill, HB 4142, to extend GIPA to the life insurance industry, suggesting that Section 20(b) currently does not apply to life insurers.  As of this writing, no action has been taken on HB 4142 since 11/8/2023.   

Employment Cases

A number of recent GIPA lawsuits name employers and allege that the employers required disclosure of family medical histories during the employment application process or inquired into family medical histories during pre-employment physicals.  These suits have been filed against Ford Motor Company, World Wide Technology, Abbvie, and Amazon, among others. 

Section 25 of GIPA governs employers.  Section 25(a) requires that employers, employment agencies, labor organizations, and licensing agencies treat genetic testing and genetic information in such a manner that is consistent with the requirements of federal law. Section 25(b) indicates that employers may release genetic testing information only in accordance with GIPA.  According to Section 25(c), an employer, employment agency, labor organization, and licensing agency shall not directly or indirectly: 

  1. 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, preemployment application, labor organization membership, or licensure;
  2. Affect the terms, conditions, or privileges of employment, preemployment application, labor organization membership, or licensure, or terminate the employment, labor organization membership, or licensure of any person because of genetic testing or genetic information with respect to the employee or family member, or information about a request for or the receipt of genetic testing by such employee or family member of such employee;
  3. Limit, segregate, or classify employees in any way that would deprive or tend to deprive any employee of employment opportunities or otherwise adversely affect the status of the employee as an employee because of genetic testing or genetic information with respect to the employee or a family member, or information about a request for or the receipt of genetic testing or genetic information by such employee or family member of such employee; and
  4. Retaliate through discharge or in any other manner against any person alleging a violation of this Act or participating in any manner in a proceeding under this Act.

Conclusion

Please join us tomorrow for the final post in our week-long focus on GIPA, where we will discuss GIPA’s impact on other types of litigation, potential defenses for companies named in GIPA litigation, and considerations for companies doing business in Illinois that may fall within GIPA’s purview.