GINA is law... what does it mean to you?

 The President of the United States signed GINA into law in 2008. 

Title I of the 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;
• 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 HCM status to determine coverage for prophylactic ICD implant. 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 regarding health 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, the protections of GINA do not include protections from genetic discrimination in life, disability, or long-term-care insurance.

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 request that an individual or an individual’s family member undergo a genetic test for the purposes of that individual’s medical benefit.

The health insurance provisions of GINA do not cover an individual’s manifested disease or condition—one that has already appeared. GINA protects an individual’s predictive genetic information. However, GINA does protect information about manifested disease in an individual’s family members (for example, their family history of disease).

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.

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. genetic test; and
• 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.

What does GINA not do regarding employment?

·       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 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.