Genetic Non-Discrimination
In Health Insurance and Employment

What is Genetic Non-Discrimination in Health Insurance? What is Non-Discrimination in Employment?

Because of the sensitive nature of genetic information, genetic discrimination is a concern for some individuals. Discrimination can occur with regard to medical insurance and employment. Related to this concern, are the confidentiality of results and privacy issues. Although some legal safeguards are in place, there are some areas that may not be fully covered.

Below is a brief list of current protections:


  • Americans With Disability Act – The ADA was designed to protect people with disabilities (including genetic disorders), and it prohibits employers from discriminating against qualified individuals with disabilities in any employment-related situations.


  • HIPAA – Because of the concern of maintaining confidentiality, a federal law was implemented in April 2003 to provide patient protection. HIPAA (Health Information Portability and Accountability Act) requires health care professionals to obtain patient permission before releasing any confidential information in either verbal or written form to outside parties.


  • State Laws – Currently, a number of states prohibit genetic discrimination in employment and health insurance. In Illinois, the Genetic Information and Privacy Act provides that genetic testing and information from testing be kept confidential and disclosed only under limited circumstances. Under this Statute, an employer “shall treat genetic testing information in such a manner that is consistent with the requirements of federal law, including but not limited to the Americans with Disabilities Act.” The law also prevents an insurer from seeking the results to a genetic test and allows the insurer to only consider the results of genetic testing in connection with a policy of health insurance if the individual voluntarily submits the results and the results are favorable to the individual.


  • Executive Order/EEOC – In 2000, President Clinton issued Executive Order 13145 to prohibit discrimination in Federal employment based on genetic information. This order only applies to employees of the Federal government. The U.S. Equal Employment Opportunities Commission (EEOC) oversees the government’s program.


  • EEOC/Civil Rights Act – EEOC was created in the historic Civil Rights Act of 1964, and it was designed to be a civil rights enforcement agency. Congress gave EEOC litigation enforcement authority in the 1970s to eliminate illegal discrimination from the workplace. This authority allows the EEOC to pursue class action suits against employers and also smaller suits on behalf of individuals. The commission accepts charges from anyone who feels they have been discriminated against, including individuals who feel they have been discriminated against based on genetic information.

Genetic discrimination has the potential to occur when a person shares a family history or genetic test results within a health care or employment context. While confidentiality between patients and their physicians is required by law, information can be released to outside parties if the patient gives consent. Additionally, the results of genetic tests can be misinterpreted by insurance companies, employers, and, in some cases, even physicians, which may lead to discrimination problems.

Below is an article appearing in the April 2001 issue of JUF News:

Genetic Discrimination, By SUSAN VAN DUSEN
Special to JUF News – Chicago

On Feb. 9, 2001, the Equal Employment Opportunity Commission (EEOC) filed a court action challenging genetic testing by the Burlington Northern Santa Fe Railway Co. The company had required all union members who claimed work-related carpal tunnel syndrome to provide blood samples for a DNA test targeting a condition that may predict some forms of carpal tunnel syndrome. At least one employee refused to provide a sample, concerned it would be used for genetic testing. He was threatened with discharge if he did not submit it.

The commission reported that individuals, without their knowledge or consent, were being subjected to genetic testing that was not job-related, not necessary. The only conceivable explanation is that the railroad wanted to use the genetic testing to argue that they would have gotten carpal tunnel anyway, so they shouldn’t get workers’compensation.

There definitely is genetic discrimination occurring in our society, said Mary Davidson, executive director of Genetic Alliance, an international genetics coalition for more than 300 groups. The problem is the need for credible personal testimonies about the problem. Our group is conducting a pilot study to identify incidents of privacy abuse and unauthorized disclosures. We are creating a database of people’s experiences with genetic discrimination.

Lynn Fleischer, an associate in the Health Care group at Sidley and Austin, disagrees. I’ve seen no evidence of genetic discrimination. People are being scared away from getting genetic testing. They’re afraid of taking the risk of the results becoming known. We’re overdoing this a bit.

Sarah (not her real name), a Chicago-area Jewish woman, was concerned that she would be punished for taking a genetic test if the information somehow became known. Even though her sister had died of breast cancer and her mother was a breast cancer survivor, Sara didn’t want to take the test for the breast cancer gene.

I was terrified to think what could happen. If I had the gene, the results would go on my records, and I could be uninsurable for life if the information got out.

She gave a false name, no social security number and asked her doctor to keep her results in a separate file. Fortunately, Sarah did not test positive for the gene. But the fear of that information becoming public still is with her.

Terri Sergeant of South Carolina suffered repercussions when she took a blood test to find out if she had a genetic condition. Terri had consistently received excellent work reviews and bonuses. Two years after her employer switched to a partially self-insured program, she began experiencing tightness of the chest. She told her doctor that her brother had died at age 37 of alpha-1-antitrypsin deficiency, which causes lung infections. A blood test verified that she had the same disease.

Terri began an expensive treatment that would keep symptoms under control. Shortly after another excellent work review and bonus in 1999, the company’s human resources/accountant breached Terri’s privacy and told her boss about the expensive treatment. Terri was fired. She filed a claim through the EEOC which ruled that the company had discriminated against her based on the cost of treatment for a genetic disorder. Currently she is in settlement talks.

How are we protected from genetic discrimination? At least 33 states have enacted legislation to address discrimination. Illinois law holds that genetic testing and information from testing be confidential, disclosed under limited circumstances. But, state law is not uniform. There is no universal definition of the term genetic information.

On the federal level, the Kennedy-Kassenbaum Act of 1996 (Health Insurance Portability and Accountability Act) prohibits insurance companies from establishing eligibility for enrollment based upon genetic information, medical history, and health status.

As of this writing, new federal privacy regulations mandated by the Kennedy-Kassenbaum law were published Dec. 28, 2000, and were due to become effective Feb. 26, 2001. States must be in compliance by 2003.

These regulations are a floor to protect genetic privacy, said Mary Davidson, but we must continue to push for stronger laws on the federal level to strengthen privacy law and protect against the misuse of genetic information in decisions concerning employment and insurance.

The following are reasons why a federal non-discrimination bill is necessary:


  • The current laws combined do not cover everyone in all situations.
  • Discriminating against someone based on their genetic status is wrong, and is similar to discriminating against someone for other reasons, such as religion, skin color, disability, etc.
  • Having a predictive (predisposition) gene for a disease, such as breast cancer, does not mean that the disease will necessarily develop, nor does it mean that it will develop right away.
  • Genetic information is often misinterpreted, and is not completely understood.
  • It is estimated that we all have between 5-40 genetic mutations. This could put every individual in a position of being discriminated against, given that his or her mutations were known.

For these reasons, laws on genetic discrimination are needed. The Chicago Center for Jewish Genetic Disorders is currently supporting two bills, one in the House, and one in the Senate dealing with genetic discrimination in insurance and employment.

Learn About the Most Current Legislation

The bills have been introduced to protect individuals from misuse of their genetic information. The bills would prevent the use of predictive genetic information in both employment related decisions, such as hiring, firing, etc., and insurance related decisions, such as denying, canceling, or altering an individual’s insurance policy.

H.R. 1910 The Genetic Non-Discrimination in Health Insurance and Employment Act
Introduced by Rep. Louise Slaughter (D-NY), 5/1/03

As of 6/16/03:
190 cosponsors. Referred to the Subcommittee on Employer-Employee Relations.

S. 1053 Genetic Information Nondiscrimination Act of 2003
Sponsored by Senator Olympia Snowe (R-ME), introduced 5/13/03

Individual and group insurers are both prohibited from raising premiums or restricting enrollment based on an individual’s genetic information. The bill will restrict employers from discriminating against their employees based on this information by allowing employees the right to sue for damages. Means of enforcement for insurance companies is weaker.

As of 6/16/03:
8 Cosponsors: Frist, Jeffords, Enzi, Collins, Hagel, DeWine, Gregg, Snowe The bill has passed through the Senate Health, Education, Labor & Pensions (HELP) Committee and is expected to be voted on in the Senate shortly.

According to Senator Frist (May 23, 2003 Congressional Record), the government has, “. . . an obligation, a responsibility, to protect people from the threat that their genetic information can be used against them in any way. . . If unchecked, the fear of genetic discrimination will prevent individuals from participating, whether it is in research studies, or in the gathering of information that can be used and applied more broadly to people. . . It will prevent people from taking advantage of the new technologies, which can be and, in fact, almost certainly will be lifesaving. It will keep people from getting tests, even from discovering that they are not at risk for genetically related diseases. Also, the fear of genetic discrimination has the potential to prevent citizens from making informed health decisions.”

“If one does not have that information, they simply are not going to be able to make informed health care decisions, whether it is in lifestyle or to determine whether or not they need an annual cardiac or heart catheterization once a year, or if they have the gene for breast cancer so that they would go and get mammographies more often. If they refused to get the test because of the fear of the discrimination, clearly they are not able to make informed health decisions for themselves.”

“In the past, Congress has taken on the battle against broad discrimination in all sorts of legislation. We think back to the 1964 Civil Rights Act; to 1990, the American with Disabilities Act; more recently to the Health Insurance Portability and Accountability Act. Today, we extend those protections to citizens with genetic markers, a move that has the power, I would argue, to save lives.”

More Legislative Information:

Ever wondered how a bill becomes a law? Find out at this House website on The Legislative Process

For the most up-to-date information, track the bill yourself at Thomas, which is maintained by the library of congress: Just enter S. 1053 or H.R. 1910 in the box for Bill Number and hit search.