HomeMy Public PortalAboutGINA LawFact Sheet
U.S. Department of Labor
Employee Benefits Security Administration
September 2009
The Genetic Information Nondiscrimination Act of 2008 (GINA)
The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits discrimination in
group health plan coverage based on genetic information. GINA is effective for plan years
beginning after May 21, 2009 (January 1, 2010 for calendar year plans). Regulations
implementing the provisions of GINA were made public on October 1, 2009.
Builds on HIPAA's protections. GINA expands the genetic information protections included
in the Health Insurance Portability and Accountability Act of 1996 (HIPAA). HIPAA prevents a
plan or issuer from imposing a preexisting condition exclusion provision based solely on genetic
information, and prohibits discrimination in individual eligibility, benefits, or premiums based on
any health factor (including genetic information).
Additional underwriting protections. GINA provides that group health plans and health
insurance issuers cannot base premiums for an employer or a group of similarly situated
individuals on genetic information. (However, premiums may be increased for the group based
upon the manifestation of a disease or disorder of an individual enrolled in the plan.)
Prohibits requiring genetic testing. GINA also generally prohibits plans and issuers from
requesting or requiring an individual to undergo a genetic test. However, a health care
professional providing health care services to an individual is permitted to request a genetic test.
Additionally, genetic testing information may be requested to determine payment of a claim for
benefits, although the regulations make clear that the plan or issuer may request only the minimum
amount of information necessary in order to determine payment. There is also a research exception
that permits a plan or issuer to request (but not require) that a participant or beneficiary undergo
a genetic test.
Restricts collection of genetic information. GINA also prohibits a plan from collecting genetic
information (including family medical history) prior to or in connection with enrollment, or for
underwriting purposes. Thus, under GINA, plans and issuers are generally prohibited from
offering rewards in return for collection of genetic information, including family medical history
information collected as part of a Health Risk Assessment (HRA). The regulations provide
several examples illustrating GINA's application to HRAs.
An exception is included for incidental collection, provided the information is not used for
underwriting. However, the regulations make clear that the incidental collection exception is not
available if it is reasonable for the plan or issuer to anticipate that health information will be
received in response to a collection, unless the collection explicitly states that genetic
information should not be provided.
Other protections. GINA also contains individual insurance market provisions, administered
by the Department of Health and Human Services's Centers for Medicare & Medicaid Services,
privacy and confidentiality provisions, administered by the Department of Health and Human
Services's Office for Civil Rights, and employment -related provisions, administered by the
Equal Employment Opportunity Commission (EEOC).