Genetic Information Nondiscrimination Act of 2008

1. Genetic Information Nondiscrimination Act of 2008 Olophius E. Perry, District Director Equal Employment Opportunity Commission Los Angeles District Office

2. “Burlington Northern Santa Fe Railway Co. agreed to stop testing its employees for genetic defects as part of a workplace discrimination settlement announced yesterday between the railroad and the U.S. Equal Employment Opportunity Commission. “The settlement -- the first of its kind -- comes two months after the EEOC went to court to ask that the railroad be ordered to halt genetic tests on blood taken from employees who had filed claims for work-related injuries based on carpal tunnel syndrome.” (The Washington Post, April 19, 2001) Why GINA/Why Now? EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

3. Genetic Discrimination ADA Coverage (1995) • Actual, Record, Regarded as prongs • Compliance Manual, Ch. 2: Definition of Disability • § 902.8: Regarded as having a substantially limiting impairment • “Covered entities that discriminate against individuals on the basis of . . . genetic information are regarding the individuals as having impairments that substantially limit a major life activity.” EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

4. EO 13145 GINA Precursor We must not allow advances in genetics to become the basis of discrimination against any individual or any group. . . . [This is] the first executive order of the 21st century, to help meet this great 21st century challenge. EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

5. Genetic Information Nondiscrimination Act (GINA) • May 21, 2008, the President signs GINA into law. • Title I – Health Insurance; Title II - Employment EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

6. Basic Rules • GINA: • Prohibits use of genetic information • Restricts intentional acquisition of genetic information • Requires confidentiality • Strictly limits disclosure EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

7. GINA Acquisition of Genetic Information • General Rule: • Employers shall not request, require, or purchase genetic information with respect to an employee or a family member of the employee • Exceptions • Inadvertent request, require, purchase • “Water cooler” problem • Casual conversation EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

8. GINA – Acquisition of Genetic Information cont. • Request for health or genetic services • Part of a wellness program • Requirements include: • Written request and knowing authorization • Information goes only to individual and health care provider • Individually-identifiable information does not go to employer; employer gets information only in the aggregate EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

9. GINA More Exceptions • Family & Medical Leave • Compliance with certification requirements under Federal, state, or local FMLA leave laws • Purchase of documents commercially and publicly available • Such as newspapers, periodicals, magazines, books • Not including medical databases or court records EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

10. GINA – More Exceptions cont. • Forensic Lab/Human Remains Identification • Limited DNA testing • Genetic monitoring • Biological effects of toxic substances in the workplace • Requirements include: • Written notice and knowing authorization (unless required by law or regulation (e.g., OSHA, MSHA, Atomic Energy Act; state law) • Information only to individual and health care provider or certified genetic counselor involved in monitoring program • Individually-identifiable information does not go to employer; employer gets information only in the aggregate EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

11. GINA – Confidentiality • If an employer has genetic info: • Kept confidential • In a separate medical file (ADA file) • Disclosure • To the employee/member (or family member) • To an occupational or health researcher for research under 45CFR Part 46 • Per court order, but • Only the genetic information expressly authorized by the order • If order obtained without knowledge of individual, s/he is informed of order and information disclosed EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

12. GINA – Confidentiality • Disclosures, continued • Government officials investigating compliance with GINA • Made in compliance with employer’s obligations under FMLA, or similar state or local law • Family medical history in case of imminent hazard • Consistent with HIPAA Privacy Rule EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

13. GINA – Relationship to other laws • GINA does not • Preempt state genetic discrimination laws • Affect coverage of ADA, Rehabilitation Act, or state/local disability discrimination laws • Bar use and access to of a subset of medical information that otherwise not barred by ADA, etc. • Limit or affect protections/right under worker’s comp laws EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

14. GINA – Relationship to other laws cont. • GINA does not • Limit authority of federal department or agency to support occupational or health research on human subjects per 45 CFR Part 46 • Limit statutory or regulatory authority of OSHA, MSHA or other workplace health and safety laws and regulations • Apply to the Armed Forces Repository of Specimen Samples • Require any specific benefit to individual or family member EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

15. GINA Effective Date • EEOC is to issue regulations in May 2009 • GINA Title II goes into effect November 21, 2009 EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

16. GINA – Prohibitions • Employers shall not • Fail or refuse to hire, or to discharge, any employee, or otherwise to discriminate . . . with respect to the compensation, terms, conditions, or privileges of employment of the employee, because of genetic information . . . • Limit, segregate, or classify employees . . . that would deprive or tend to deprive any employee of employment opportunities or otherwise adversely affect the status of the employee . . . because of genetic information . . . EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

17. GINA – Prohibitions • Retaliation is prohibited against any individual who opposes actions unlawful under GINA, files a charge, or assists another • Employment agencies, labor unions, and training programs may not cause an employer to discriminate EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

18. GINA – Coverage • GINA incorporates by reference (does not amend) Title VII definition of employer (15 or more employees), and includes federal employees covered by § 717 • GINA covers state employees, and employees covered by GERA, the Congressional Accountability Act and employees of the Executive Office of the President, WH Residence, VP Residence, any employee of the executive branch not otherwise covered by section 717 • GINA covers employers, employment agencies, labor unions, and labor-management training programs EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

19. Title VII 180/300 days EEOC charge/conciliation/ right to sue GERA 180 days – Complaint filed with EEOC ALJ hearing/EEOC appeal Congressional Accountability Act Process through Office of Compliance Exec Office of Pres/WH/VP Residence Counseling and mediation §§ 717/ 29 CFR 1614 process Federal employees §§ 717/1614 process GINA – Enforcement EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

20. GINA – Remedies • Title VII • Equitable relief, damages (including punitive damages) • Caps on damages • Attorney’s fees & costs • GERA/CAA/Exec Office/Federal Sector • Title VII-type remedies, including comp damages and attorney’s fees (no punitive damages) EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)

21. Contact Info • Olophius E. Perry, District Director • 213-894-1112 • Santos Albarran, Program Analyst • 213-894-1045 • 213-849-1121 (TDD) • http://www.eeoc.gov/ • http://www.gpoaccess.gov/fr/ • http://www.genome.gov/24519851 EEOC / Genetic Information Nondiscrimination Act of 2008 (10/08)