United States: Genetic Non-Discrimination Bill Signed Into Law

After thirteen years of consideration, legislation prohibiting health insurance companies and employers from discriminating against individuals based on genetic information was signed into law on May 21, 2008.

The Genetic Information Nondiscrimination Act (H.R. 493) (GINA) balances the benefit of using genetic information for medical advances and care management with the potential for harm that could be caused by the misuse of genetic information. Through a bipartisan effort, Congress reduced the potential for harm by creating Federal standards for prohibited and permitted uses by insurers and employers of an individual's genetic information.

An individual's genetic information is defined in GINA as "information about (i) such individual's genetic tests, (ii) the genetic tests of family members of such individual, and (iii) the manifestation of a disease or disorder in family members of such individual." It also includes "any request for, or receipt of, genetic services, or participation in clinical research which includes genetic services, by such individual or any family member of such individual." Additionally, genetic information related to an individual or family member of an individual includes the genetic information of any fetus carried by a pregnant woman and the genetic information of any embryo legally held by an individual or family member using assisted reproductive technology. Genetic information does not include information about the gender or age of an individual.

Regulation Of Insurers

GINA regulates insurers, including those covered by the Employee Retirement Income Security Act (ERISA), state regulated plans, and the individual market. Group health plans, including small group health plans, health insurance issuers offering health insurance coverage in the individual market, non-federal governmental plans and issuers of Medicare supplemental policies are all subject to nondiscrimination provisions in GINA.

Group health plans and health insurance issuers offering health insurance coverage in the individual market are prohibited from using genetic information to adjust premiums or contribution amounts for a group or individual. Additionally, they are proscribed from requesting or requiring an individual or family member of an individual to undergo a genetic test. Health insurance issuers offering health insurance coverage in the individual market are also prohibited from establishing eligibility rules for enrollment based on genetic information and from imposing a preexisting condition exclusion on the basis of genetic information.

Similarly, issuers of Medicare supplemental policies are prohibited from denying or conditioning the issuance or effectiveness of a policy based on genetic information, nor may they impose an exclusion of benefits based on a preexisting condition due to genetic information. Issuers of Medicare supplemental policies are also barred from discriminating in the pricing of a policy, including the adjustment of premiums, based on genetic information.

Insurers are prohibited from requesting, requiring or purchasing genetic information for underwriting purposes. However, insurers may obtain and use the results of genetic tests to make determinations regarding payment, consistent with other provisions of the Act, as long as they only request the minimum amount of information necessary to accomplish the intended purpose. Moreover, GINA specifically provides exceptions to general rules for genetic tests for research purposes. Insurers may request, but may not require, an individual to undergo a genetic test for research purposes if (a) the research complies with the Common Rule (part 46 of title 45, Code of Federal Regulations); (b) it is clearly specified that compliance with the request to submit to genetic testing is voluntary and that refusal to undergo the test will not impact enrollment status or premium or contribution amounts; (c) they notify the Secretary of the Department of Health and Human Services that such activities are being conducted; (d) they provide the Secretary with a description of the activities; and (e) they comply with other requirements set forth by the Secretary.

GINA amends the privacy regulations promulgated pursuant to the Health Insurance Portability and Accountability Act of 1996 (HIPAA) by prohibiting the use or disclosure by a group health plan, health insurance issuer, or issuer of a Medicare supplemental policy of genetic information about an individual for underwriting purposes. GINA also specifies that genetic information should be treated as health information for the purposes of HIPAA.

Regulation Of Employers

Employers, employment agencies, labor organizations and joint labor-management committees also are prohibited from discriminating against an employee, individual or member based on genetic information. Employers may not refuse to hire or discharge an employee, or otherwise discriminate against an employee with respect to compensation, terms, conditions, or privileges of employment on the basis of genetic information. Likewise, employment agencies are prohibited from failing or refusing to refer an individual for employment based on genetic information, and labor organizations may not exclude or expel a member due to genetic information.

Employment agencies, labor organizations, and joint labor-management committees are prohibited from causing or attempting to cause an employer to discriminate against a member in violation of GINA. Employers, labor organizations, and joint labor-management committees also are prohibited from discriminating against an individual regarding admission to, or employment in apprenticeship or training programs.

Additionally, employers, employment agencies, labor organizations and joint labor-management committees are prohibited from limiting, segregating, or classifying employees, individuals or members based on genetic information in a manner that would deprive or have a propensity to deprive the individuals of employment opportunities or have an otherwise negative impact on their status as employees. They are prohibited from requesting, requiring or purchasing an employee's genetic information except in specified circumstances, including when the entity:

  • Inadvertently requests or requires family history of the employee or family member of the employee;

  • Offers health or genetic services and certain conditions are met, such as obtaining an individual's voluntary, written authorization, and disclosure to the entity is limited to aggregate terms that do not disclose the identity of an individual;

  • Requests or requires family medical history to comply with certifications required by the Family and Medical Leave Act;

  • Purchases commercial and publicly available documents that include medical history;

  • Uses the information for genetic monitoring of the biological impact of toxic substances in the workplace, and certain conditions are met; or

  • In certain circumstances, conducts DNA analysis for law enforcement purposes as a forensic laboratory and requires such analysis for quality control purposes.

In cases where employers, employment agencies, labor organizations or joint labor-management committees obtain an individual's genetic information, they may not use the information for discriminatory purposes. The genetic information must be maintained in separate medical files and be treated as a confidential medical record of the employee. These entities may only disclose such information in specified instances, such as: (a) at the written request of an individual; (b) to an occupational or other health researcher if the research is conducted in accordance with the Common Rule (part 46 of title 45, Code of Federal Regulations); (c) in response to an order of a court; (d) to government officials investigating compliance with GINA; (e) if the disclosure is needed in connection with the employee's compliance with the certification provisions of the Family and Medical Leave Act; or (f ) to a Federal, State or local public health agency with respect to information related to a contagious disease that presents an imminent hazard of death or life-threatening illness. These provisions of the statute create one of the greatest potential traps for employers as they do not authorize disclosure in response to discovery requests or even a subpoena. Thus, employers responding to such requests will need to take special care to ensure that information which falls within the definition of "genetic information" is withheld and maintained in confidence.

As with other non-discrimination statutes, employees who believe that they have been discriminated against in violation of the law must file a charge of discrimination with the Equal Employment Opportunity Commission. If litigation is filed in federal court, a prevailing plaintiff may recover any damages authorized by the Civil Rights Act of 1991, including compensatory damages, back pay, front pay, and equitable relief.

In a provision unrelated to the genetic information purposes of the Act, the law also amends the Fair Labor Standards Act to increase the penalties for child labor violations which result in death or serious injury.


The new Federal law follows many state laws already enacted which relate to genetic discrimination in employment and health insurance. However, GINA is even more far-reaching because it imposes nondiscrimination provisions on ERISA plans, something that states are not permitted to do.

Although GINA provides individuals with some important protections, GINA is not a panacea. Some critics have indicated that GINA does not go far enough. For example, GINA does not prohibit discrimination against individuals once they have manifested a condition. GINA is also limited to health insurance; it does not cover other types of insurance, such as life insurance. On the other hand, GINA also has been criticized for being unnecessary, burdening employers when there is little evidence of abusive practices by employers, or potentially interfering with an insurer's ability to request certain genetic tests to ensure proper treatment for an enrollee.

GINA attempts to balance potential medical advances, such as using genetic information to permit the early detection of illnesses, enable individuals to take preventive steps to decrease their likelihood of contracting a disorder, or develop effective therapies, against the potential for misuse of the information. The ultimate impact of GINA on an individual's interest in obtaining genetic information and on preventing discriminatory practices remains unknown.

Practical Tips For Employers:

  • The statute will not go into effect for 18 months, but employers should look for the Equal Employment Opportunity Commission to publish regulations interpreting the new law within the next year.

  • Employers should review their discrimination policies now to ensure that they cover genetic information.

  • Employers should carefully review and revise documents soliciting medical information (e.g. post-offer medical examination records, fitness for duty records, or other authorizations for the release of medical records) to ensure that they specifically exclude questions requesting genetic information, unless there is a direct and compelling need for the information.

  • Employers should roll-out training on this new law for managers. This would be a good time to refresh training on all types of discrimination, harassment and retaliation and to tie in the new provisions of your Company's policies.

The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.

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