The concept of "genetic discrimination" only recently entered our vocabulary. But the problem is well documented. Indeed, the Council for Responsible Genetics was the first organization to compile documented cases of genetic discrimination, laying the intellectual groundwork for future legislation. In as many as five hundred cases, individuals and family members have been barred from employment or lost their health and life insurance based on an apparent or perceived genetic abnormality. Many of those who have suffered discrimination are clinically healthy and exhibit none of the symptoms of a genetic disorder. Often, genetic tests deliver uncertain probabilities rather than clear-cut predictions of disease. Even in the most definitive genetic conditions, which are few in number, there remains a wide variability in the timing of onset and severity of clinical symptoms. Employers have access to medical/genetic information, which may be used to discriminate against their employees. One example is the discrimination faced by workers in the Burlington Northern Santa Fe Railroad Company, which the Equal Employment Commission revealed to be conducting genetic tests on its employees without their informed consent, as a means of counteracting workers compensation claims for job-related stress injuries.
Beneath the issue lies an endless number of personal stories. A woman diagnosed with hereditary hemochromatosis, a condition that causes excessive iron storage, but the symptoms of which are preventable through medication, loses her health insurance despite clear medical evidence that she is healthy. A middle-aged man applying for a government job is denied employment after medical and genetic tests reveal that he is an unaffected carrier (someone who carries one variant of a gene, but no illness) of Gaucher’s Disease. A woman whose daughter is developmentally normal after being successfully treated for phenylketonuria is denied group health coverage at a new job because her daughter is considered a high-risk patient.
On May 21, President Bush signed the Genetic Information Nondiscrimination Act (GINA) of 2008 into law. Senator Ted Kennedy hailed GINA as the "first civil rights bill of the new century." CRG President Jeremy Gruber was a leader of the 12 year effort and founded the Coalition for Genetic Fairness, a 500 organization strong community, for this purpose.
GINA provides strong new protections against access to genetic information and genetic discrimination in both the health insurance and employment settings. The health insurance provisions of the bill, Title I, took effect on May 21, 2009. The protections in employment, Title II, will take effect 18 months after the date of signing, on November 21, 2009. These protections will apply to residents of all 50 US States and territories.
GINA does not address all possible forms of genetic discrimination. For example, it does not address life insurance, disability insurance, or long-term care insurance. GINA does not protect symptomatic individuals as well.
GINA is a strong and essential first step in the fight against genetic discrimination and misuse of medical information more generally, but it is not our last battle. The precedent of GINA, as well as the improved level of education on Capitol Hill as the result of the process of enacting it, will allow us to build upon the foundation that GINA now provides. We must continue to seek out and address discrimination in every corner and ensure that strong protections are in place to address it. To this end, the Council for Responsible Genetics continues to work for progressive legislative reform at the state and federal level to prevent the access to and misuse of genetic information and ensure the right of privacy that is recognized in common law and the Fourth and Fifth Amendments of the Constitution.
CRG Response to Berkeley Genetic Testing Program Changes
CRG Testimony Before CA Legislature on Berkeley's Genetic Testing Program
Organizations Send Letter Urging Legislature to Seek a Full Accounting of Cal Program
Organizations Join Together in Letter Supporting AB 70
CRG Raises New Questions About Berkeley's Genetic Testing Program
CRG Statement on DTC Testing Investigation
CRG Urges University of California, Berkeley Dean Richards to Abandon Proposed DNA Collection Program of Incoming Freshman
Background Materials
FDA Investigation into Direct to Consumer Genetic Testing Companies (An Analysis)
Full Text of the Genetic Information Nondiscrimination Act (GINA)
The Genetic Information Nondiscrimination Act (GINA): A Powerpoint Presentation
Interactive GINA Education Tool
Interim Final Rule on Title I of GINA from DOL, DOT, and HHS
The New Genetic Information Nondiscrimination Act: How it Came to Pass and What it Does (PDF) (GeneWatch article by Jeremy Gruber, May 2009)
GINA Title I Summary- Health Insurance (PDF)
GINA Title II Summary- Employment (PDF)
Genetic Testing: Preliminary Policy Guidelines
Genetic Discrimination Position Paper
Position on Predictive Testing
Position Paper on the "Gay Gene"
Articles
Gina's Genotypes(featuring CRG), by David Kaye, University of Michigan Law Review February 2010
Special issue of GeneWatch on the Genetic Information Nondiscrimination Act 2009
The Genetic Privacy of Presidential Candidates, by George Annas, NEJM, November 2008
Direct to Consumer Genetic Testing in the United States by Kathy Hudson, American Journal of Human Genetics 2007
Misleading Marketing of Genetic Tests by Helen M. Wallace, GeneWatch, Mar-Apr 2005
Dubious Genetic Testers by Stephen Barrett and Harriet Hall, GeneWatch, Mar-Apr 2005
Technologies of Justice: An Interview With Peter Neufeld by Peter Shorett, GeneWatch, January 2003
DNA Down Under by Michael Strutt, GeneWatch, January 2003
"DNA Data Banks Would Taint Justice" by Paul Billings, Boston Globe, 14 January 1999
"Don't Take Liberties with Our Genes" by Philip Bereano, Seattle Times, 17 July 1997
Legislative Materials
FDA Testimony on DTC Genetic Testing, July 20, 2010 by Jeremy Gruber
Comments on Interim Final Rule to Implement Title I of GINA, December 2009 by Jeremy Gruber
Comments on Proposed Rule to Implement Title II of GINA, May 2009 by Jeremy Gruber (PDF)
Comments on Title I of GINA Request for Information, October 2008 by Jeremy Gruber
Equal Employment Opportunity Commission Testimony, February 25, 2009 by Jeremy Gruber (PDF)
Equal Employment Opportunity Commission Testimony, February 25, 2009 by Andrew Imparato (PDF)
Amicus brief on People vs. Michael Johnson (PDF)
Comments to the National Conference of Insurance Legislators, July 2002 by Sophia Kolehmainen, Peter Shorett, Sara Gambin, and Paul Billings
House of Representatives Testimony, July 2001 by Paul Billings
Resources on Executive Order 13145: To Prohibit Discrimination in
Federal Employment Based on Genetic Information
Policy Guidelines of the Equal Employment Opportunity Commission
U.S. Senate Testimony, May, 1998 by Jeremy Gruber
CRG in the Press
Wellness Efforts Face Hurdle-Asking Workers About Family Health History Can Clash with U.S. Genetics Law
Wall Street Journal 2010
A Future Without Down Syndrome?, Daily Beast, 2010
Wellness Program Group seeks moratorium on GINA Rules, GenomeWeb, 2009
A Future in Baseball, Hinging on DNA, NY Times 2009
SACGHS to Continue Review of DTC Genetic Testing, GenomeWeb, 2009
Genetic Testing+Abortion=???, NY Times Magazine
A Cold Hit by David Dudley, Cornell Magazine
"A Genetic Code of Privacy" Boston Globe Editorial
Genetic Discrimination: A Primer Diane Horn inerviews Philip Bereano, KCMU 90.3, Seattle WA
Resources
ACLU
Canadian Coalition for Genetic Fairness
The Coalition for Genetic Fairness (United States)
Genetic Alliance
Genetics and Public Policy Center
Georgetown University Health Policy Institute
Hadassah
National Workrights Institute
Privacy Rights Clearinghouse