Legislation to Ban Discrimination Based on Genetic Information Passed by Congress

Howard Schragin
May 28, 2008 — 1,990 views  
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On May 1, 2008, the House of Representatives, by a vote of 414-1, passed the Genetic Information Nondiscrimination Act, which prohibits discrimination on the basis of genetic information with respect to health insurance and employment. The Senate had previously approved the bill, with a 95-0 vote, on April 24, 2008. President Bush is expected to sign the bill within the next two weeks.

The legislation, which has been in the works for almost a decade, seeks to allow individuals to take advantage of genetic testing, technologies, research and new therapies without fear of reprisal from both insurers and employers in terms of denied or altered coverage or employment. As noted by Sen. Edward Kennedy (D-Mass.): “This legislation opens the door to modern medical progress for millions and millions of Americans. It means that people whose genetic profiles put them at risk or cancer or other serious conditions can get tested and seek treatment without fear of losing their privacy, their jobs and their health insurance.”

General Provisions
Generally, GINA prohibits group health plans and insurers from raising rates or denying coverage to individuals based on genetic information or genetic services and also prohibits employers from using such information for decisions on hiring, discharging, compensation and other terms and conditions of employment.

GINA applies to employers with more than 15 employees and to all health insurance plans, including those under ERISA, state-regulated plans and the individual market. The new legislation, however, is not applicable to life insurance and long-term care insurance.

Under GINA, genetic information includes tests to determine genotypes, mutations or chromosomal changes to a person or family member’s DNA and a family history of a particular disease or disorder. Genetic information does not include information about the gender or age of the individual.

Employment Discrimination
In the context of employment, GINA prohibits employers from:

  • discriminating against employees in hiring, discharging, compensation and the terms, conditions or privileges of employment because of the employee’s genetic information (disparate impact claims are specifically excluded from the coverage of the law);
  • requesting, requiring or purchasing genetic information with respect to an employee or family member with the exception of certain enumerated circumstances permitting limited disclosure; and
  • retaliating against an employee who opposes discrimination based on genetic information.

In addition to those specific prohibitions, GINA also:

  • protects employers from liability for inadvertent requests or receipt of genetic information;
  • permits employers to request, require or purchase genetic information in connection with genetic monitoring for the effects of toxic substances in the workplace;
  • requires that employers maintain genetic information confidentially on separate forms and in separate medical files and shall only be disclosed under certain circumstances to the employee to the employee or in certain other limited circumstances, such as pursuant to court order or to government officials investigating compliance with the Act; and
  • provides remedies to aggrieved individuals that mirror those available to employees subject to discrimination under Title VII, including back pay, front pay, attorneys fees, costs and compensatory and punitive damages subject to statutory caps up to $300,000.

GINA also provides a firewall between insurers and employers. Included as a concession to concerns raised by members of the Senate, this firewall shields employers from liability for genetic discrimination involving the employer’s health plan and decisions made by insurers in connection with those plans.

Health Insurance Discrimination
With respect to health insurance, GINA prohibits group health plans and insurance issuers from:

  • adjusting premiums or contribution amounts on the basis of genetic information;
  • requesting or requiring that an individual take a genetic test; and
  • collecting genetic information for underwriting purposes and requesting genetic information prior to an individual’s enrollment.

GINA also provides for the following with respect to health insurance:

  • genetic information shall be treated as health information under the Health Insurance Portability and Accountability Act and the disclosure of genetic information for underwriting purposes shall not be a permitted use or disclosure thereunder;
  • the imposition of penalties against health plans and insurers for violations of the rules including penalties up to $500,000 for unintentional violations; and
  • group health plans and insurance issuers may request disclosure of genetic information for research purposes if certain conditions are met.

Individuals with a Manifested Disease or Disorder
Of note, GINA does not prohibit discrimination once someone already has a disease or disorder. In the employment context, laws that prohibit discrimination based on disability, such as the Americans with Disabilities Act and Rehabilitation Act, will, in many instances, provide an individual with protection against discrimination. This exclusion raises some concern in the health insurance context, because it would allow insurers to consider an individual’s existing disease or disorder in making coverage or rate decisions. The argument is based on the proposition that if a person who is genetically predisposed to a certain illness should not be denied medical coverage then there is no rationale for denying coverage to someone who already has the disease and needs medical insurance to cover the actual costs of treating the disease.

Conclusion
The health insurance portions of GINA go into effect one year after it is signed into law and the employment portions go into effect 18 months after signing. The new legislation also calls for the Secretary of Labor, the Secretary of Health and Human Services, the Secretary of the Treasury and the Equal Employment Opportunity Commission to issue regulations within 12 months of the date of enactment.

While the effects of this legislation will likely not be felt immediately by employers —most employers still do not rely on genetic testing when making personnel decisions and litigation of genetic discrimination claims is minimal — employers are encouraged to review and make appropriate changes to their plans, policies and procedures to ensure timely compliance with the law.

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For questions regarding legal issues of this legislation, please contact Howard Schragin at (212) 351- 4502 or [email protected] or Wendy Goldstein at (212) 351-3737 or [email protected]. For questions regarding the legislation’s policy implications, please contact Maura A. Farrell at (202) 861-1883 or [email protected].

Howard Schragin