For more information on how genetic discrimination issues have been decided under U.S. law, please visit CRG's Genetics and the Law database.

GENETIC TESTING, DISCRIMINATION, AND PRIVACY

The concept of “genetic discrimination” only recently entered our vocabulary. But the problem is well documented. 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 recent example is the discrimination faced by workers in the Burlington Northern Santa Fe Railroad Company, which the Equal Employment Commission last year 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.

The current patchwork of federal laws, including the Americans with Disabilities Act and the Health Insurance Portability and Accountability Act, hardly scratch the surface of the problem. While 42 states provide some level of protection against genetic discrimination in health insurance, and 21 states have similar statutes for employment, most of these laws are incomplete and inconsistent in their applicability. In all cases, state and federal laws have primarily addressed the unlawful use of genetic data, sidestepping the question of whether employers and insurance companies should have access to genetic information in the first place.

The most effective way to prevent the misuse of genetic information is to keep it confidential and securely out of the reach of outsiders. The right of privacy is recognized in common law and the Fourth and Fifth Amendments of the Constitution. In order to help citizens protect themselves from genetic discrimination, CRG maintains a comprehensive online database of current privacy and anti-discrimination laws. We also work for progressive legislative reform at the state and federal level.

Background Materials

Genetic Testing: Preliminary Policy Guidelines

Genetic Discrimination Position Paper (also available in .pdf format)

Position on Predictive Testing (also available in .pdf format)

Position Paper on the "Gay Gene" (also available in .pdf format)

State Genetic Discrimination Legislation .pdf or .doc

Articles

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's Genetics and the Law Resource

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


CRG in the Press

A Cold Hit by David Dudley, Cornell Magazine, Jul-Aug 2006

"A Genetic Code of Privacy" Boston Globe Editorial, 2 January 1998

Genetic Discrimination: A Primer Diane Horn inerviews Philip Bereano, KCMU 90.3, Seattle WA 19 January 1998


Resources

Health Privacy Project at Georgetown University

Privacy Rights Clearinghouse

Alpha-1 Association

The Coalition for Genetic Fairness (chaired by the National Partnership for Women and Families)

Genetic Alliance

National Workrights Institute

Resources on Executive Order 13145: To Prohibit Discrimination in
Federal Employment Based on Genetic Information
Policy Guidelines of the Equal Employment Opportunity Commission

ACLU

Federal Legislation: The Genetic Nondiscrimination in
Health Insurance and Employment Act (S. 318/H.R. 602)