GENETIC TESTING, PRIVACY AND DISCRIMINATION
 

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.

 

 

New CRG Report: Genetic Privacy and Biobanks

 


Protecting Genetic Data - A Primer for Employers

 

CRG Coalition to Attorney General: Review FBI's Massive Biometric Database



CRG Testifies Against Rollback of Newborn Privacy Protections

New CRG Special Report
NEWBORN SCREENING IN AMERICA: Problems and Policies



California Senate Judiciary Committee Passes CRG Supported Genetic Privacy Bill 

CRG Applauds California Introduction of the Genetic Information Privacy Act

 


FDA Puts Brakes on Direct-to-Consumer Genetic Testing

CRG in the News on the FDA Action

Watch CRG President Jeremy Gruber discuss the dramatic new developments on DTC

 Analysis of FDA Investigation into Direct to Consumer Genetic Testing Companies

FDA Testimony on DTC by CRG President Jeremy Gruber

 


California Governor Signs Landmark CRG supported Genetic Nondiscrimination Law

California Legislature Passes CRG Supported Genetic Nondiscrimination Bill

CRG Urges California Governor to Sign Genetic Nondiscrimination Bill



Visit CRG's New Consumer Genetic Privacy Manual 



Background Materials

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 and EEOC Final Rule Summary- Employment (PDF)

FDA Investigation into Direct to Consumer Genetic Testing Companies (An Analysis)

Genetic Testing: Preliminary Policy Guidelines

Genetic Discrimination Position Paper

Position on Predictive Testing 

Position Paper on the "Gay Gene"

 
Articles

Ownership and Identity in an Age of Genomic Medicine, Patricia Williams 2012

Special Issue of GeneWatch Magazine on Biobanks, 2011

Special Issue of GeneWatch Magazine on Direct-to-Consumer Genetic Testing, 2010

Direct-to-Consumer Genetic Testing:  Avoiding a Culture War, By Robert C. Green and James P. Evans, Genetics in Medicine 2010

Fighting Genetic Discrimination in Canada, by Jo Anne Watton, GeneWatch 2010

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

CRG Urges California Governor to Sign Genetic Privacy and Nondiscrimination Law, August 2011

Massachusetts State Legislature Testimony on Genetic Bill of Rights
, April 2011 by Jeremy Gruber

FDA Testimony on DTC Genetic Testing
, March 8, 2011 by Jeremy Gruber

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




CRG in the Press

Should Bosses Have Access to Worker's Genetic Test Results? WSJ July 2013

Proposed DNA Database Greatly Expands Scope of Surveillance, Live Mint/WSJ October 2012

Could Better DNA Testing Facilities Have Saved the Talwars?, First Post India October 2012

Government Bill Aims to Build Pool of DNA Samples of Offenders; Experts Fear Possible Misuse, Economic Times Sept 2012


Assessing Genetic Information Protections
, Health Data Management, June 2012

California Genetic Privacy Bill Moves Forward, California Newswire, April 2012

Newborn Screening Helps Save Twins' Lives, by Victoria Colliver, SF Chronicle, January 2012

Genetic Privacy, MTV Brazil

FDA Panel Hearing Suggests Medical Professionals May Play Role in DTC Testing, by Alex Philippidis, Genetic Engineering and Biotechnology News, March 2011

FDA Panel Says Home Gene Tests Need MD Input, by Emily Walker, MedPage, March 2011

FDA Panel Wants Doctors to Supervise Genetic Testing, by Andrew Zajac, Seattle Times, March 2011

Listen to CRG President Jeremy Gruber's interview on the Privacy Piracy show, February 2011

Genome Hackers (a profile of CRG's privacy work), by Kashmir Hill, Forbes, January 2011

Final GINA Rules to Take Effect Soon, by Matt Jones, Genome Web Daily, November 2010

Getting Serious About Personal Genomics' Risks, by Dan Vorhaus, Genomics Law Report, September 2010

Wider Debate Swirls Over Ruling That Curtailed Berkeley's Genetic Testing Program, by Josh Keller, The Chronicle of Higher Education, August 2010

UC Berkeley, Yielding to 'Flawed Reading," Alters Student Genetic-Testing Project, by Kirell Lakham, GenomeWeb, August 2010

Berkeley Forced to Backtrack on Genetic Testing, by Pater Aldhouse, New Scientist, August 2010

UC Berkeley Backs Off Gene-Test Program for Students, by Rob Waters, Bloomberg, August 2010

UC Berkeley Will Not Send Students DNA Results, by Victoria Colliver, SF Chronicle, August 2010

UC Berkeley Professors Defend Student Genetic Testing,by Laurel Rosenhall, Sacramento Bee, August 2010

DTC Genomics Gets Time Before FDA as Agency Considers Regulatory Strategy, GenomeWeb Daily, July 2010

Berkeley Will Use its Own Genetics Lab for Student-Testing Program, by Kirell Lakham, GenomeWeb, June 2010

UC Berkeley Offer to Test DNA of Incoming Students Sparks Debate, by Larry Gordon, LA Times, June 2010

A Few Wrinkles in U.C. Berkeley's Plans to Test Freshman Genes, by Rachel Gross, NY Times, May 2010

Unwinding Berkeley's DNA Test, by Jenniefer Epstein, Inside Higher Ed, May 2010

Ethics of UC Berkeleys Gene Testing Questioned, by Victoria Colliver, SF Chronicle, May 2010

UC Berkeley Fends Off DTC Genomics Critics, Genome Web,  May 2010

Well, They Certainly Got Everyone Talking, Genome Web, May 2010

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

 

Berkeley Campaign Resources

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



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





GINA Signed into Law

 
 
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