CIPP/US Study Guide
Chapter 8: Medical Privacy

Genetic Information Nondiscrimination Act (GINA)

GINA (2008) bars health insurers from discriminating on genetic predisposition absent manifest symptoms and bars employers from using genetic information in employment decisions. It amended ERISA, the Social Security Act, and the Civil Rights Act, with narrow exceptions and confidentiality requirements.

GINA prohibits health insurers from discriminating based on genetic predisposition absent manifest symptoms or requiring applicants to undergo genetic testing, and prohibits employers from using genetic information in employment decisions, including against someone whose family member manifested a disease.

GINA amended ERISA (no premium adjustments or required genetic testing for group plans, except voluntary research testing with notice), the Public Health Service Act (individual market), the Social Security Act (Medicare supplemental), and the Civil Rights Act (employment). The ERISA penalty is $100 per day of noncompliance per participant, with minimums that can rise to $15,000.

Employer exceptions and confidentiality

Employer requests for genetic information are barred unless an exception applies: inadvertent requests, voluntary wellness programs with written authorization, FMLA compliance, commercially/publicly available materials, legally required toxin monitoring with written authorization, and DNA quality-control for law enforcement labs. Any such information must be kept in separate, confidential medical files. GINA itself has no private right of action, though the amended laws may provide one.

Key terms - quick answers

What is “GINA”?
The Genetic Information Nondiscrimination Act of 2008, limiting use of genetic information in health insurance and employment.
What is “ERISA”?
The Employee Retirement Income Security Act, which GINA amended to bar genetic-based premium adjustments and genetic testing requirements for group health plans.
What is “Manifestation of disease”?
The appearance of actual symptoms; GINA's protections target discrimination based on genetic predisposition in the ABSENCE of such manifestation.