The Risk for Genetic Discrimination

Some people worry about their employers, their health insurance company or other types of insurance companies using the information gained from genetic testing against them. Using the information in this manner is called genetic discrimination. Fortunately, there are both state and federal laws in place designed to protect individuals from genetic discrimination.

New York residents who are considering undergoing genetic testing are protected by the New York State Civil Rights Law and Article 26 of the Insurance Law against genetic discrimination in many aspects of health insurance coverage, but are not protected in other areas.

The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects most Americans from being treated unfairly because of differences in their DNA that may affect their health. The new law prevents discrimination from health insurers and employers. The President signed the act into federal law on May 21, 2008. The parts of the law relating to health insurers are in effect as of May 2009, and those relating to employers are in effect as of November 2009.

With this combination of state and federal laws, most New York State residents are well protected from genetic discrimination with regard to health insurance and employment. These laws, however, do not cover areas such as life insurance, disability insurance and long-term care insurance. 

New York State Laws

Section 79-1 of the New York State Civil Rights Law and Article 26 of the Insurance Law both offer protections for New York State residents undergoing genetic testing. For individuals who are undergoing clinical genetic testing, i.e. are providing a sample for testing with the expectation that they will receive a test result within a specified time frame, the Civil Rights Law requires a written informed consent be completed and signed prior to any genetic testing. This informed consent includes information such as a description of the test being performed, the reason for testing, who will receive a copy of the test results, a statement that the person undergoing testing may wish to obtain genetic counseling prior to signing the consent, and notification that the testing sample will be destroyed within 60 days unless otherwise indicated. The results of genetic testing may be released to a health insurance company, but only for the purpose of processing a claim. In addition, Article 26 of the NYS Insurance Law provides protection against an insurance company requesting or requiring an individual to undergo genetic testing.

The New York State Civil Rights Law also includes guidelines and protections for individuals who opt to undergo research testing, which involves sending a sample to a laboratory conducting research that may or may not ever lead to a test result being sent back to the patient or their providers. (Back)

Federal Laws

Health Insurance Privacy and Portability Act (HIPAA)

The federal Health Insurance Privacy and Portability Act (HIPAA) regulates the way health care providers and health insurers gather, maintain, and share protected health information. HIPAA is designed to give individuals control over who has access to their health information. Genetic discrimination protections in HIPAA apply to employer-based and commercially issued group health insurance only. HIPAA prohibits group health plans from using any health status-related factor, including genetic information, as a basis for denying or limiting eligibility for coverage or for increasing premiums. It also limits exclusions for preexisting conditions in group health plans to 12 months and prohibits such exclusions if the individual has been covered previously for that condition for 12 months or more. HIPAA also states explicitly that genetic information in the absence of a current diagnosis of illness shall not be considered a preexisting condition. (Adapted from (Back)

Genetic Information Non-Discrimination Act (GINA)

Signed into law on May 21, 2008, the Genetic Information Non-Discrimination Act (GINA) provides health insurance and employment protection at the federal level for individuals undergoing genetic testing. GINA is designed to offer a minimal level of protection throughout the United States and therefore, does not cancel out any state laws that might provide more protection.

The health insurance protections in Title I, in effect May 21, 2009, apply to individuals undergoing predictive genetic testing, i.e. testing in individuals who do not already have symptoms but are interested in learning their risk to develop a genetic disorder. This protection does extend to information about a family member who does have symptoms of a genetic disorder. GINA states:

  • Health insurers may not require individuals to provide their genetic information or the genetic information of a family member to the insurer for eligibility, coverage, underwriting, or premium-setting decisions;
  • Health insurers may not use genetic information either collected with intent, or incidentally, to make enrollment or coverage decisions;
  • Health insurers may not request or require that an individual or an individual’s family member undergo a genetic test; and
  • In the Medicare supplemental policy and individual health insurance markets, genetic information cannot be used as a preexisting condition.
The health insurance provisions of GINA do not apply to members of the US military, to veterans obtaining healthcare through the Veteran’s Administration, or to the Indian Health Service.

The Title II employment protections, in effect November 21, 2009, are also designed to offer a minimum level of protection to individuals who do not already have symptoms but are interested in learning their risk to develop a genetic disorder. Click here to learn more about the Title II employment protections of GINA. (

(Adapted from the Genetic Alliance) (Back)

Area’s of Insurance that are Not Protected

There are no state or federal laws prohibiting life insurance, disability insurance, or long-term care insurance companies from asking a subscriber about genetic testing, or from using this information to underwrite a policy or deny coverage. (Back)

Useful Links

Browse the NYS Civil Rights Law and Article 26 of the Insurance Law

National Conference of State Legislatures – look up your state laws

US Department of Health and Human Services site for understanding HIPAA

Genetic Alliance resource on GINA

New York State Task Force on Life and the Law

National Human Genome Research Institute – Genetic Discrimination



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Text for this site provided by Erin Houghton, MS, CGC Genetic Counselor, Ferre Institute, Inc