Genetic Information and Employee Wellness: A Compliance Primer

 

“Gina works the diner all day, working for her man, she brings home her pay…”
But if her employer starts asking about her family medical history, we might have a problem. Not with Bon Jovi—but with GINA, the Genetic Information Nondiscrimination Act. If you’re not sure what that means, this post is your compliance crash course.

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TL;DR: Two City of Chicago employees sued under GINA, claiming the City’s wellness program improperly requested genetic information from them and their spouses. But a federal judge granted summary judgment for the City, finding that neither plaintiff provided evidence the City ever acquired genetic information—such as family medical history or genetic test results—as defined by the statute. If your organization offers wellness incentives, this decision is a valuable GINA 101.

👉 Read the full opinion here

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🧬 What Counts as “Genetic Information” Under the Law?

The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits employers with 15 or more employees from:

• Using genetic information in employment decisions like hiring, firing, or promotion;
• Requesting, requiring, or purchasing genetic information about applicants or employees (including their family members), except in very limited circumstances;
• Disclosing genetic information, except in specific, regulated situations;
• Retaliating against someone who complains about genetic discrimination or participates in a related investigation;
• Harassing individuals based on genetic information in a way that creates a hostile work environment.

Per the EEOC, “genetic information” includes:

• An individual’s genetic tests
• Genetic tests of family members
• Family medical history
• Requests for or receipt of genetic services
• Genetic info about a fetus or embryo using assisted reproductive technology

It does not include biometric screening results like cholesterol, blood pressure, or weight—unless those results are tied to inherited conditions or genetic testing.

❌ No Genetic Info, No GINA Claim

Chicago’s employee wellness program charged workers (and their spouses) $50/month extra if they opted out of biometric screenings and health risk assessments. Two employees sued, alleging that the City violated GINA by requiring them and their spouses to provide “genetic information” without first obtaining their consent, when they enrolled in the program.

The court granted summary judgment for the City. Here’s why the case didn’t hold up:

• No protected genetic information was shared.
  One plaintiff opted out entirely, and the other only disclosed biometric data like cholesterol, BMI, and glucose—none of which qualifies as genetic information under GINA.
• The City never accessed any personal health data.
  The plaintiffs couldn’t produce evidence that the City received individual results from the wellness questionnaires or biometric screenings.
• The legal threshold wasn’t met.
  GINA applies only to genetic tests, family medical history, or related information. None of that was present here.

📋 The EEOC’s Rules for Staying Out of Trouble

GINA has six narrow exceptions that allow an employer to request or receive genetic information. These include:

1. Inadvertent acquisition (e.g., overhearing something in the breakroom)
2. Voluntary wellness programs that include clear consent
3. FMLA or similar leave certifications
4. Public sources, like newspapers or public websites
5. Voluntary or required genetic monitoring under laws like OSHA
6. Forensic DNA analysis by law enforcement

Even when one of these applies, employers must:

• Avoid using the information for employment decisions
• Keep any data confidential and in a separate medical file
• Include a “do not provide genetic information” disclaimer when requesting medical documentation
• Ensure wellness programs are truly voluntary

💡 Five Things HR and Legal Need to Do Right Now

1. Add the disclaimer.
   Whenever you ask for health information—say, for an ADA accommodation—include the EEOC’s safe harbor language warning providers not to disclose genetic info.
2. Audit your wellness program.
   Make sure it doesn’t collect family medical history or other protected data—and that participation really is voluntary.
3. Keep medical and HR files separate.
   Any health-related data should be stored separately and handled confidentially.
4. Train your managers.
   Offhand comments like “did your dad have cancer too?” may feel harmless—but they can become evidence.
5. Don’t assume compliance.
   Just because you’ve never had a GINA claim doesn’t mean your practices are airtight.

Bottom line:

It only takes one badly designed wellness program to turn a forgotten acronym into a lawsuit. But when it comes to GINA, “livin’ on a prayer” isn’t a compliance strategy. Take time now to review your wellness programs, HR forms, and internal policies—before someone turns your biometric screening into a federal lawsuit.