Does Genetic Discrimination Exist?
There is much debate over whether there is significant evidence of widespread genetic discrimination. Complicating matters is the fact that many people who have faced genetic discrimination do not reveal their experiences for fear of further discrimination.
In a famous documented case, the Burlington Northern Santa Fe Railroad was sued by the U.S. Equal Opportunity Employment Commission for requiring that their employees who file claims for work-related carpal tunnel syndrome (CTS) undergo genetic testing for a genetic deletion that has been proposed (in some studies) to make a person more susceptible to CTS. The Burlington Northern Santa Fe Railroad settled this lawsuit, stopped requiring genetic testing for their employees, and promised that they would not pursue any punitive actions against employees that refused testing or participated in the lawsuit.
Although documented cases are few and far between, many brave individuals, health professionals, and the media have brought attention to individual reports of both employer and health insurer genetic discrimination. These cases are often referred to as "anecdotal evidence." Although not based on statistical evidence or court room testimony, many people feel that these cases demonstrate that genetic discrimination does exist and that anti-genetic discrimination legislature is needed.
What Laws Protect My Rights?
Until recently, genetic information was only partially protected by separate federal and state laws.
Regarding genetic discrimination by health insurers, the 1996 Health Insurance Portability and Accountability Act (called HIPAA) placed restrictions on the use of health-related information (including genetic information) by group health insurers in making decisions about coverage and premiums for an individual. HIPAA also states that genetic information without a current diagnosis cannot be considered a pre-existing condition. HIPAA does not apply, however, to people who need individual coverage (those not on a group plan). It also does not prevent an entire group from being denied coverage or charged higher rates based on the genetic information of one or more of its group members.
Regarding genetic discrimination by employers, the Equal Employment Opportunity Commission has interpreted the Americans with Disabilities Act (ADA) to provide some protections against the use of genetic information by employers. However, the extent of those protections is unclear.
On the state level, many states are taken matters into their own hands, passing laws covering genetic discrimination. To date, over 45 states have passed laws relating to genetic discrimination by life or health insurance companies, and over 30 states have passed laws relating to genetic discrimination by employers. These laws, however, vary greatly.
On May 21, 2008, President George W. Bush signed the Genetic Information Nondiscrimination Act (GINA), a two-part piece of legislation that many are calling the most important anti-discrimination law in decades.
Title I of this law, which prohibits health insurance companies from using genetic information to deny coverage or set payment rates, took effect in May 2009. Title II of this law, which prohibits employers from using genetic information when making decisions about hiring, firing, privileges and compensation took effect in November 2009. GINA is enforced by the Department of Health and Human Services, the Department of Labor, and the Equal Employment Opportunity Commission.
What Does the Genetic Information Nondiscrimination Act (GINA) do?
Is it important to understand exactly what GINA does and does not do in terms of protecting against genetic discrimination.
- Protects against genetic discrimination by health insurers and employers. GINA does not protect against genetic discrimination by life insurers, disability insurers, and long-term care insurers. GINA does not apply to members of the U.S. Military, or people receiving health services through the Indian Health Service or Veteran's Administration.
- Prohibits health insurers from setting eligibility or premium or contribution amounts for group and individual plans based on a person's genetic information. Genetic information is defined as information about a person's genetic test(s), genetic test(s) preformed on family members (up to and including 4th degree relatives), diseases or genetic conditions in a family member, as well as participation of a person or their family members in research that includes genetic testing, genetic counseling, and/or genetic education. GINA does not, however, prohibit medical underwriting based on a current diagnosis or mandate coverage for medical tests and/or treatments.
- Prohibits health insurers from requesting or requiring a person to take a genetic test. A genetic test is defined as a test used to assess genotypes, mutations or chromosome changes. Genetic test does not mean HIV testing, infection or viral testing and routine blood testing (CBC, liver panel, and cholesterol).
- Prohibits employers from using a person's genetic information when making decisions about hiring, firing, promotions and job assignments.
- Prohibits employers from requesting, requiring or buying genetic information about an employee or their family members. GINA does not prohibit, however, employers from collecting genetic information from employees for toxic monitoring programs, employer-sponsored wellness programs, and the administration of federal and state Family and Medical Leave Laws. The employer may not use or disclose the person's genetic information.
GINA Resources
Last Reviewed January 20, 2010