Genetic Information Nondiscrimination Act (GINA) (2008)

1) Link to the Text of the Act
Read the statute (42 U.S.C. § 2000ff et seq.)

2) Why It Was Done
GINA was passed to prohibit discrimination in health coverage and employment based on genetic information, addressing concerns raised by advances in genetic testing and research.

3) Pre-existing Law or Constitutional Rights
Prior laws such as the Health Insurance Portability and Accountability Act (HIPAA, 1996) offered some protections but did not specifically cover genetic data. GINA filled this gap.

4) Overreach or Proper Role?
Supporters argue it ensures genetic innovation isn’t stifled by fear of discrimination. Critics contend it adds regulatory burdens and leaves gaps in areas like life, disability, and long-term care insurance.

5) Who or What It Controls

• Employers (cannot use genetic info in hiring, firing, or job decisions)
• Health insurers (cannot use genetic info to determine coverage or premiums)
• Employees and individuals (gain rights to genetic privacy)

6) Key Sections / Citations

• 42 U.S.C. § 2000ff-1: Prohibition against genetic discrimination in employment
• 42 U.S.C. § 2000ff-5: Prohibition against acquisition of genetic information
• 42 U.S.C. § 2000ff-9: Confidentiality requirements

7) Recent Changes or Live Controversies

• Ongoing debates about whether GINA should be expanded to cover life and disability insurance
• Concerns about genetic data collected by consumer DNA testing companies (e.g., 23andMe, Ancestry)
• Litigation continues around the definition of “genetic information”

8) Official Sources

• U.S. Code – Title 42, Chapter 21F
• EEOC – Genetic Information Discrimination
• NIH – GINA Overview

• Civil Rights
• Employment
• Health Insurance
• Genetics
• Privacy