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How Does GINA impact ME?
GINA provides legal protections against genetic discrimination in health insurance and employment for every individual in the nation. For additional information, please select the topic of interest:
Title I: Genetic Nondiscrimination in Health Insurance
The following health insurance protections take effect on May 21, 2009.
GINA covers genetic information of an individual and the genetic information of family members (for example, in determining family health history of disease). GINA does not cover an individual's manifested disease or condition--a condition from which an individual is experiencing symptoms, being treated for, or that has been diagnosed.
The Genetic Information Nondiscrimination Act (GINA) outlines unlawful practices for health insurers in the use of genetic information.
More specifically, GINA strictly prohibits the following:
- 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. However, a health insurer may request that an individual provide genetic information if coverage of a particular claim may be appropriate only if there is a known genetic risk. For additional information, please read the Q&A portion below, entitled "What about submitting claims to my health insurance company?";
- 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.
Research exception: For joint research activities conducted by health insurers in collaboration with external research entities, a health insurer in either the group or individual market may request, but not require, in writing that an individual undergo a genetic test. The individual may voluntarily choose to undergo such genetic testing, but non-compliance will not have a negative effect on the premium or enrollment status of the individual. Genetic information may only be used for research and not for underwriting purposes.
 What about submitting claims to my health insurance company?
With regard to making coverage determinations for a specific claim, the insurer could require genetic information. For example, the insurer may request information about an individual's BRCA status to determine coverage for prophylactic mastectomy. The insurer may request only the minimum amount of information necessary for decision-making. If an individual would not like to provide genetic information to their health insurer about such a claim, the individual can elect to pay for the test or treatment out-of-pocket.
What does GINA not do?
- The protections of GINA do not include protections from genetic discrimination in life, disability, or long-term-care insurance.
- 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. Furthermore, GINA does not apply to federal employees obtaining healthcare through the Federal Employees Health Benefits Plans.
- The health insurance provisions of GINA do not cover an individual's manifested disease or condition--a condition from which an individual is experiencing symptoms, being treated for, or that has been diagnosed. However, GINA does protect information about manifested disease in an individual's family members (for example, their family history of disease).
- GINA does not restrict genetic services, the practice of medicine, or the authority of healthcare professionals, whether or not they are affiliated with a health plan or issuer or an employer. Clinicians and healthcare providers can recommend that an individual or an individual's family member undergo a genetic test for the purposes of that individual's medical benefit.
- GINA provides a baseline for protection against genetic discrimination for all Americans. GINA does not preempt state law; therefore if a state's genetic discrimination law provides more extensive protections than GINA, GINA does not change it. However, there is no provision within GINA that defines the strength of a law as based upon the scope of the law or the penalties associated with the law. The regulations for enforcing GINA are currently being drafted, which will clarify this definition.
Title II: Genetic Nondiscrimination in Employment
The following protections in employment settings take effect on November 21, 2009.
GINA covers genetic information of an individual and the genetic information of family members (for example, in determining family health history of disease).
GINA does not cover an individual's manifested disease or condition--a condition from which an individual is experiencing symptoms, being treated for, or that has been diagnosed.
Title II of the Genetic Information Nondiscrimination Act (GINA) outlines unlawful activities for an employer, employment agency, labor organization, or training program in the use of genetic information.
More specifically, GINA strictly prohibits the following:
- An employer may not use genetic information in making decisions regarding hiring, promotion, terms or conditions, privileges of employment, compensation, or termination.
- An employer, employment agency, labor organization, or training program may not limit, segregate, or classify an employee or member, or deprive that employee or member of employment opportunities, on the basis of genetic information.
- An employer, employment agency, labor organization, or training program may not request, require, or purchase genetic information of the individual or a family member of the individual except in rare cases. Please refer to the next section.
- An employment agency, labor organization, or training program may not fail or refuse to refer an individual for employment on the basis of genetic information, nor may the agency, labor organization, or training program attempt to cause an employer to discriminate against an individual on the basis of genetic information.
- An employer, labor organization, or joint labor-management committee may not use genetic information in making decisions regarding admission to or employment in any program for apprenticeship or training and retraining, including on-the-job training.
- A labor organization may not exclude or expel from membership, or otherwise discriminate against, an individual because of genetic information.
Under what circumstances can an employer, employment agency, labor organization, or training program have access to my genetic information?
- When the information is inadvertently provided as part of the individual's medical history or the medical history of a family member;
- When the information is publicly available (although not when the information is contained in medical databases or court records);
- When the employer has obtained the individual's written authorization as part of an employer-sponsored genetic monitoring program of the biological effects of toxic substances in the workplace. This is only permissible if Federal or State law requires such a monitoring program. In such cases, only the healthcare professional and the employee can know of the individual and identifiable genetic information. The employee must be informed of their individual monitoring results, but the employer can only have access to the collective genetic information of the entire group of employees, without identifying information;
- When the employer offers health or genetic services, including services offered as part of a wellness program, and with the individual's written authorization. In such cases, only the healthcare professional or board certified genetic counselor involved in providing the services may know of individually identifiable genetic information. Again, the employer may know only of the collective genetic information of the entire group of employees, without identifying information; and
- Where the employer operates as a law enforcement entity and requires the individual's DNA for quality control purposes in the forensic lab or human remains identification settings. The information may not be used for any determinations of the terms of employment.
What efforts must be made to ensure my information is kept confidential?
Any genetic information that an employer, employment agency, labor organization, or joint labor-management committee possess about an individual must be treated as the confidential medical record of the individual and must be maintained in separate forms and in separate files. An individual's genetic information may not be disclosed except at the individual's written request or in response to a court order. However, in order to maintain compliance with existing laws, an employer, employment agency, labor organization, or joint labor-management committee may provide an individual's genetic information to the Federal, State, or local authorities.
What does GINA not do?
- The employment provisions of GINA apply to those employers covered under the Americans with Disabilities Act (ADA) and Title VII of the Civil Rights Act of 1964; therefore it does not cover employers with fewer than 15 employees. Furthermore, GINA does not apply to members of the US military.
- The employment provisions of GINA do not cover an individual's manifested disease or condition--a condition from which an individual is experiencing symptoms, being treated for, or that has been diagnosed. However, GINA does protect information about manifested disease in an individual's family members (for example, their family history of disease).
- The employment provisions of GINA do not interfere with an employee's ability to qualify for family or medical leave under state or federal Family and Medical Leave laws, nor to participate in an employer-sponsored wellness program or other genetic services offered by an employer. Furthermore, GINA does not interfere with an employer's ability to offer a safe and healthy work environment through federal or state required genetic monitoring of the biological effects on employees of toxic substances in the workplace.
- GINA provides a baseline for protection against genetic discrimination for all Americans. GINA does not preempt state law; therefore if a state's genetic discrimination law provides more extensive protections than GINA, GINA does not change it. However, there is no provision within GINA that defines the strength of a law as based upon the scope of the law or the penalties associated with the law. The regulations for enforcing GINA are currently being drafted, which will clarify this definition.
Examples of Genetic Discrimination
The following examples are not comprehensive but have been adapted from real examples of genetic discrimination from the Coalition for Genetic Fairness resource, in partnership with the National Partnership for Women & Families, entitled "Faces of Genetic Discrimination: How Genetic Discrimination Affects Real People."
Health Insurance
- Jacob, a boy who carries a gene for a disorder called Long QT Syndrome (LQTS), was denied coverage under his father・s health insurance policy because of his ：pre-existing condition.； LQTS is a rare and little-known genetic disorder that sometimes triggers sudden cardiac death. Those who carry the gene may be healthy until they suffer an attack without warning, but carriers can control their risk of cardiac arrest with preventive beta-blocker therapy. Jacob・s father wanted Jacob to be insured, but even after their state enacted a law prohibiting genetic discrimination, Jacob・s insurance company still refused to cover him.
- Last year, Jonathon・s mother April was diagnosed with colon cancer. Because April・s aunt died of colon cancer, and her sister was undergoing chemotherapy for the cancer, April decided to undergo genetic testing to determine if the cancer could be hereditary. She tested positive for a mutation in one of four genes regulating the replication of DNA in her cells, also known as Lynch syndrome. Last month, Jonathon・s health insurance costs increased dramatically in response to the genetic test results of his mother.
Employment
- Kim was a social worker with a human services agency until she was fired because of her employer・s fears about her family history of Huntington・s disease. During a staff workshop on caring for people with chronic illnesses, Kim mentioned that she had been the primary caretaker for her mother, who died of Huntington・s disease. Because of her family history, Kim had a 50 percent chance of developing the disease herself. One week later, despite outstanding performance reviews, Kim was fired from her job.
- Gary was diagnosed with Carpal Tunnel Syndrome (CTS) in 2000 and took leave from work to have surgery and recover. When he returned to work, Gary was told that he would have to undergo a mandatory medical examination. Gary was told that if he refused to submit to the examination he would be fired. He later learned that his employer was administering genetic tests to workers without their consent to identify a possible genetic predisposition to CTS as a defense to workers・ compensation claims. Gary refused to take the exam, and soon after his employer began disciplinary proceedings to fire him.
Last Updated: November 10, 2008
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Working to pass Genetic Nondiscrimination Legislation 
