President Bush has signed the Genetic Information Nondiscrimination Act (GINA) into law, protecting employees and the insured from discriminatory practices based upon a person's genetic profile. GINA was widely supported in both the Senate and House of Representatives, with nearly unanimous votes. The law relating to health insurers will take effect by May 2009, and that relating to employers will take effect by November 2009.

Several states already have laws prohibiting genetic discrimination. The type of protection and the broadness of the state laws vary. With federal legislation now in place, this means all states now have a minimum standard of protection to be met. Existing state laws, if meeting or exceeding the federal minimum protections, will not be weakened. States are constitutionally enabled to enact stronger and broader protections than federal laws.

GINA includes the following with regard to insurance: an amendment to the Employee Retirement Income Security Act of 1974 (ERISA), the Public Health Service Act (PHSA), and the Internal Revenue Code to prohibit a group health plan from adjusting premium or contribution amounts for a group on the basis of genetic information; prohibition of group health plans from requesting or requiring an individual or family member of an individual from undergoing a genetic test; prohibition of a group health plan from requesting, requiring, or purchasing genetic information for underwriting purposes; authorization of a penalty against any sponsor of a group health plan for any failure to meet requirements of the Act; prohibition of a health insurance issuer offering health insurance coverage in the individual market from establishing eligibility rules for enrollment based on genetic information; amendment of title XVIII (Medicare) of the Social Security Act (SSA) to prohibit an issuer of a Medicare supplemental policy, on the basis of genetic information, from denying or conditioning the issuance or effectiveness of the policy, or discriminating in the pricing of the policy; requirement for the Secretary of Health and Human Services to revise Health Insurance Portability and Accountability Act of 1996 (HIPAA) privacy regulations to: treat genetic information as health information.
For employment, the GINA provisions include a prohibition as an unlawful employment practice for an employer to discriminate against an employee because of genetic information, including for an employer, by failing to hire or discharging an employee or otherwise discriminating against an employee with respect to the compensation, terms, conditions, or privileges of employment; a prohibition of an employer from limiting, segregating, or classifying employees because of genetic information in any way that would deprive or tend to deprive such individuals of employment opportunities or otherwise adversely affect their status as employees; a prohibition of an employer from requesting, requiring, or purchasing an employee's genetic information; a requirement for an employer that possesses any genetic information about an employee to maintain such information in separate files and treat such information as a confidential medical record.

GINA's HIPAA amendments impose civil penalties of $100 per violation and criminal penalties of up to $250,000 and 10 years in prison for commercial and malicious violations. GINA's discrimination provisions will authorize penalties of $100 per day/per person, with minimum penalties of $2,500 or $15,000 for minimal and more serious violations, and a maximum penalty of $500,000. The employment discrimination provisions will be enforced through Title VII of the Civil Rights Act of 1964, meaning the likely agency to enforce the provisions will be the Equal Employment Opportunity Commission.

As reported previously in DOTmed (DM 5719*), the issue of genetic discrimination has been a serious concern to such organizations as the American College of Physicians. Concerns include the possibility that an insurer might deny coverage to a person whose genetic profile indicates a predisposition to a disease, or that a potential employee might not be hired if the employer has access to negative genetic information.

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