GINA
Update: December 7, 2009
HDSA is excited about the roll-out of GINA, the Genetic Information Non-Discrimination Act. GINA bans genetic discrimination in both health insurance (GINA Title I) and employment (GINA Title II).
Current information about the initial roll-out of GINA can be found below, but final regulations are still being issued, and there is likely to be some interpretation by the courts as to how the law applies to individual cases.
For individuals who are considering getting tested and have the option of waiting, it may be advisable to wait to see how insurance companies, employers, courts, and government agencies interpret these protections.
GINA Title I: Health Insurance Protections
The Interim Final Rules of GINA Title I, which pertain to health insurance, became effective for group and individual insurance market participants on December 7, 2009.
For those with group health insurance, interim regulations take effect in the plan years beginning on and after December 7, 2009-but this date only affects Sections 101-103, which deal with genetic information, including family history, as a part of Health Insurer Risk assessments.
These Interim final rules, which were issued on October 1, 2009 by the Internal Revenue Service, the Employee Benefits Security Administration and the Centers for Medicare & Medicaid Services implement Sections 101-103 of Title I of GINA, which prohibit group health plans, health insurance issuers in group and individual markets, and issuers of Medigap policies from discriminating based on genetic information.
On the same day, the Department of Health and Human Service's Office of Civil Rights (OCR) issued a proposed rule (the Proposed Rule) which would modify HIPAA to include genetic information. The Interim Final Rules and the Proposed Rule were published in the Federal Register on October 7, 2009, and can be viewed here (http://www.access.gpo.gov/su_docs/fedreg/a091007c.html)
The agencies implementing the Interim Final Rules will, however, accept and consider post-adoption public commentary with regard to these Rules if submitted on or before January 5, 2010.
GINA Title II: Employment Protections
GINA Title II became effective on November 21, 2009 but regulations have not yet been issued by the Equal Employment Opportunity Commission (EEOC).
For individuals who are considering getting tested and have the option of waiting, it may be advisable to wait to see how government agencies, as well as courts and employers interpret these protections.