GINA and the Workplace: What Employers Must Know About Genetic‑Information Protections

Your practical roadmap to complying with the Genetic Information Nondiscrimination Act’s employment provisions, grounded in the law, EEEE‑Commission guidance, and the key cases that have shaped enforcement.

1. The Core Employment Protections of GINA

The Genetic Information Nondiscrimination Act of 2008 (GINA) creates a two‑track framework: Title I protects health‑insurance decisions, while Title II bars employment discrimination based on genetic information. Title II applies to private employers with 15 or more employees, as well as labor unions and employment agencies (Lea 2009).

Under Title II, an employer may not:

Request, require, or purchase genetic information about a current employee or job applicant.
Use genetic information to make any employment decision—including hiring, promotion, termination, or benefits.
Disclose an employee’s genetic information without the employee’s written authorization, except as required by law (Occupational Safety & Health Guide Series 2011).

“Genetic information” is defined broadly to include an individual’s genetic tests, the results of such tests, and family medical history that reveals a predisposition to disease (GINA Definitions 2019). The law also protects information about a family member’s genetic tests or disease history when that information is obtained by the employer (Villanova Law Review 2015).

These prohibitions are absolute; even a voluntary disclosure by an employee does not give the employer the right to retain the information for future employment decisions (Lea 2009). The EEOC’s regulations, first issued in 2009 and later corrected in the Federal Register (2013), spell out the precise boundaries of permissible conduct (Federal Register 2013).

2. Employer Obligations: Hiring, Testing, and Record‑Keeping

a. Pre‑Employment Screening

Employers may ask about genetic information only when it is a bona‑fide occupational qualification (BFOQ)—a narrow exception that the EEOC has never recognized as applicable to genetics (Kerstein & Lambertson 2015). Consequently, standard background checks, health questionnaires, or wellness‑program enrollment forms must exclude any request for genetic data.

The Occupational Safety & Health Guide Series (2011) advises employers to:

Remove genetic‑information fields from all pre‑employment forms.
Train recruiters to recognize and decline any unsolicited genetic disclosures.
Document the refusal to collect such data in the applicant’s file, noting the legal basis (EEOC regulations).

b. Workplace Wellness and Voluntary Testing

Wellness programs that offer genetic testing as a benefit are permissible only if the employer does not obtain the results. The EEOC’s 2013 correction clarifies that an employer may facilitate testing through a third‑party vendor, provided the vendor keeps the results separate and the employer receives only aggregate, de‑identified data (Federal Register 2013).

Lea (2009) stresses that any incentive tied to the test result—for example, a lower premium for a “low‑risk” genotype—constitutes a prohibited use of genetic information.

c. Record‑Keeping and Confidentiality

Employers who inadvertently receive genetic information must segregate it from the employee’s personnel file and store it in a separate, locked location (Occupational Safety & Health Guide Series 2011). The EEOC regulations require that such records be maintained for no longer than the duration of the employment relationship, after which they must be destroyed in a manner that prevents reconstruction (Federal Register 2013).

The 2019 definitions update clarifies that “genetic information” includes information derived from a genetic test performed on a biological sample (e.g., saliva) that the employer never physically possesses, reinforcing the need for strict data‑flow controls (GINA Definitions 2019).

3. Enforcement and the Emerging Litigation Landscape

a. EEOC Enforcement Actions

The EEOC is the primary enforcement agency for Title II. Its investigative authority includes subpoena power to obtain employer records and the ability to file civil actions in federal court (Kerstein & Lambertson 2015).

Two landmark cases illustrate how the EEOC has applied GINA:

AARP v. United States Equal Employment Opportunity Commission, D.D.C. (filed December 29 2016, Civil Action No. 16‑2113) – The AARP challenged the EEOC’s interpretation of the “voluntary disclosure” exception, arguing that the agency’s guidance allowed employers to retain genetic information after an employee voluntarily disclosed it. The district court upheld the EEOC’s position, emphasizing that once disclosed, the information must still be treated as protected and cannot be used for employment decisions (AARP v. EEOC 2016).

EEOC v. Cummins Power Generation Inc., D. Minn. (filed September 28 2015, Case No. 14‑cv‑3408) – Cummins required employees to undergo a genetic‑screening program as a condition of continued employment. The EEOC sued, and the court granted summary judgment for the EEOC, finding a clear violation of GINA’s prohibition on mandatory genetic testing (EEOC v. Cummins 2015).

These cases underscore that voluntary disclosures do not create a waiver and that mandatory testing is per se illegal.

b. Penalties and Remedies

When the EEOC prevails, it can secure injunctive relief, back‑pay, front‑pay, and liquidated damages equal to the back‑pay amount (Kerstein & Lambertson 2015). In addition, the EEOC may recover attorneys’ fees and court costs. The AARP case also highlighted the EEOC’s authority to issue regulations that clarify employer obligations, a power that has been exercised through the 2013 technical amendment (Federal Register 2013).

4. Recent Regulatory Updates and Clarifications

a. 2013 Technical Amendment

The Federal Register notice (2013) corrected a drafting error that had unintentionally allowed employers to retain genetic information obtained through a wellness program. The amendment explicitly re‑affirmed the segregation requirement and clarified that any use of the information for employment decisions remains prohibited (Federal Register 2013).

b. 2015 EEOC Proposed Rule

Kerstein & Lambertson (2015) analyze the EEOC’s proposed rulemaking that sought to tighten the definition of “voluntary disclosure” and to require explicit written consent before an employer could retain any genetic data, even if the employee offered it voluntarily. Although the final rule was never adopted, the proposal signaled the Commission’s intent to close loopholes that employers might exploit.

c. 2019 Definitions Update

The 2019 GINA definitions (GINA Definitions 2019) expanded the scope of “genetic information” to include information about a family member’s genetic tests that the employer might learn through social media or informal conversations. This reflects the modern reality of digital communication and reinforces the need for training on what constitutes protected information.

d. Ten‑Year Retrospective

Rothstein (2018) reflects on a decade of GINA enforcement, noting that most violations involve wellness‑program misuse and failure to segregate records. The author argues that future legislation may need to address direct‑to‑consumer genetic testing and employee‑initiated data sharing that bypasses traditional employer channels (Rothstein 2018).

5. Practical Compliance Checklist for Employers

| ✅ Action | Why It Matters | How to Implement | |---|---|---| | Remove genetic‑information fields from all hiring forms | Prevents illegal requests (Occupational Safety & Health Guide Series 2011) | Conduct a form audit; replace any “family medical history” items with neutral health‑status questions. | | Train HR and hiring managers on GINA | Reduces risk of inadvertent violations (Lea 2009) | Quarterly e‑learning modules; include case examples from AARP v. EEOC and Cummins Power Generation. | | Segregate any received genetic data | Required by EEOC regulations (Federal Register 2013) | Store genetic records in a locked cabinet or encrypted folder separate from personnel files; label clearly. | | Limit wellness‑program data to aggregate, de‑identified results | Allows wellness benefits without violating GINA (Federal Register 2013) | Contract with third‑party vendors that provide only summary statistics; include data‑handling clauses. | | Obtain written consent before retaining any voluntarily disclosed genetic info | Aligns with EEOC’s proposed rule (Kerstein & Lambertson 2015) | Use a standard consent form that explains the employee’s right to refuse retention. | | Establish a clear policy for responding to employee disclosures | Ensures consistent handling (Villanova Law Review 2015) | Draft a policy that (1) acknowledges the disclosure, (2) directs the employee to HR, (3) documents the interaction, and (4) destroys the data after the employment relationship ends. | | Conduct periodic compliance audits | Detects gaps before EEOC action (Rothstein 2018) | Annual internal review; external legal audit every three years. | | Stay informed on EEOC guidance and court decisions | New case law can shift obligations (AARP v. EEOC 2016) | Subscribe to EEOC newsletters; assign a compliance officer to monitor legal updates. |

6. Emerging Issues and the Future of Genetic‑Nondiscrimination Law

a. Direct‑to‑Consumer (DTC) Testing

The rise of DTC genetic testing (e.g., ancestry or health‑risk kits) creates a gray zone: employees may bring home results and share them voluntarily. Rothstein (2018) warns that current GINA language does not expressly address employer‑initiated inquiries about DTC results, leaving room for litigation. Employers should adopt a “hands‑off” policy that discourages any discussion of an employee’s DTC results.