Genetic Information Nondiscrimination Act (GINA) of 2008
The Genetic Information Nondiscrimination Act (GINA) of 2008 [Public Law
110-233, H.R. 493, S. 358] was signed into law by President Bush on May 21,
2008. The law prohibits health insurers and employers from discriminating on
the basis of genetic information and sets a national baseline of protections
from any such discrimination across the country. In the legislation, the term
“genetic information” means a person’s genetic test results, the genetic test
results of an individual’s family members and/or information about a genetic
disease or disorder in family members.
GINA includes two sections, or "Titles". Title I became effective on May 21,
2009 and addresses the use and prohibition of misuse of genetic information in
health insurance decision making. The Department of Health and Human Services
(HHS), the Department of Labor, and the Department of the Treasury are
responsible for issuing regulations and enforcing Title I. Title II will become
effective on November 21, 2009 and will prohibit the use of genetic information
in employment decision making. The Equal Employment Opportunity Commission is
responsible for issuing regulations and enforcing Title II.
This fact sheet lists resources and organizations that provide information about
the GINA law.
The GINA Legislation(Back
to Top)
Read the
text of the GINA legislation as passed by the U.S. House of
Representatives and the U.S. Senate on the Library of Congress THOMAS Web site.
[http://thomas.loc.gov/home/gpoxmlc110/h493_enr.xml]
Read the President’s remarks at the signing of the law in a White House news
release,
"President Bush Signs H.R. 493, the Genetic Information Nondiscrimination Act
of 2008." [georgewbush-whitehouse.archives.gov]
Read the summaries by the Genetics & Public Policy Center (in PDF) for Title
I (health insurance provisions) and Title II (employment provisions) of the
GINA legislation. Click on the links below to view:
Regulations and Guidance
GINA’s Legislative History
-
The legislative history
and chronology
of GINA, 2007–2008, can be tracked on the following National Human Genome
Research Institute page: [http://www.genome.gov/24519851]
-
Read more about
GINA's legislative history on the Genetics & Public Policy Web
site. [http://www.dnapolicy.org/gina/gina.history.html]
The Basics: What is GINA?(Back
to Top)
Helpful Definitions
Frequent Questions and Answers about GINA
Contacts for
Specific Questions(Back to Top)
-
General Questions
You can send specific questions about the GINA legislation to the Genetic
& Public Policy Center:
The Genetics and Public
Policy Center
[http://www.dnapolicy.org/gina/]
1717 Massachusetts Avenue, NW, Suite 530
Washington, DC 20036
E-mail: GINAinfo@jhu.edu
Phone: 202.663.5971
Fax: 202.663.5992
-
Employment Questions
If you have specific concerns about employment discrimination, contact your
local EEOC office.
For the phone number of your local EEOC office, visit the EEOC Field Offices
Web site. [http://www.eeoc.gov/offices.html]
-
Health Insurance Questions
If you have specific concerns about health insurance discrimination, contact
your state’s insurance commissioner. You can find your state’s insurance
department’s Web site and contact information on the
National Association of Insurance Commissioners Web site.
[http://www.naic.org/state_web_map.htm]
Organizations
to Help You Learn More(Back to Top)
U.S. Equal Employment Opportunity Commission (EEOC)
The EEOC is responsible for
enforcing federal laws that make it illegal to discriminate against a person in
the workplace.
National Human Genome Research Institutes (NHGRI), National
Institutes of Health
The NHGRI mission
encompasses a broad range of studies aimed at understanding the structure and
function of the human genome and its role in health and disease. A critical
part of the NHGRI mission is the study of the ethical, legal, and social
implications (ELSI) of genome research. For information on genetic
discrimination and GINA, visit
http://www.genome.gov/10002077.
Coalition for Genetic Fairness
The Coalition for Genetic
Fairness addresses the growing concern surrounding the misuse of
genetic information in health insurance and employment decisions.
Genetics & Public Policy Center
The Genetics & Public Policy
Center helps policymakers, the press, and the public understand and respond to
the challenges and opportunities of genetic medicine and its potential to
transform global public health.
The Genetics & Public Policy Center developed a Web site to provide
information about GINA to a variety of audiences, including updates on pending
regulations. You can visit the Project GINA Web site at
http://www.dnapolicy.org/gina.
National Conference of State Legislatures
The National Conference of State Legislatures
is a bipartisan organization that serves the legislators and staffs of the US.
Among the resources of the National Conference of State Legislatures is a Web
site outlining genetics laws and legislative activity. Users may choose a
subject matter of interest and view a state-by-state chart of genetics
legislation at:
http://www.ncsl.org/IssuesResearch/Health/GeneticsLegislationDatabase/tabid/14408/Default.aspx
Resources(Back to
Top)
For Health Insurers
For Employers
-
Coalition for Genetic Fairness:
For Employers
[http://www.geneticfairness.org/ginaresource_employer.html]
-
National Conference of State Legislatures:
Genetic Employment Laws [http://www.ncsl.org/default.aspx?tabid=14280]
For
Clinicians and Healthcare Providers
For Researchers