A bill that would prohibit the use of genetic information and genetic testing in underwriting with respect to health insurance and employment was passed in the U.S. House of Representatives on April 25, 2007 by a vote of 420-3. A similar bill is currently pending in the Senate. Both titled the "Genetic Information Nondiscrimination Act of 2007," S. 358, sponsored by Senator Snowe (D-NY), and H.R. 493, sponsored by Representative Slaughter (R-ME), have garnered the support of the Bush Administration. The bills, in addressing health insurers' use of genetic information, would amend the Employee Retirement Income Security Act of 1974 (ERISA), the Public Health Service Act (PHSA), and Title XVIII of the Social Security Act (Medicare). If passed and signed into law by the president, the legislation would have a substantial impact on the way that health insurers do business nationwide. In particular, this legislation would regulate the use of genetic information in health plans subject to ERISA.
The proposed legislation seeks to alleviate the patchwork of state prohibitions regarding genetic information in order to promote participation in genetic research and the use of genetic testing. Currently, most states prohibit discrimination with respect to health insurance and employment based on genetic information. However, inconsistencies exist with regard to the health insurance market. For example, some state laws may apply only to group health insurers while other state statutes may apply only to individual health insurers. In addition, states do not uniformly define genetic information. Most important, under ERISA, states may not regulate employer-purchased health plans, the bulk of the health insurance market.
Under this legislation, health insurance issuers would be prohibited from requiring an individual or family member to undergo genetic testing. In addition, health insurers would be prohibited from adjusting premiums based on a person's genetic information or family information; group health insurers would similarly be prohibited from adjusting group premiums based on the genetic information of either a person in the group or a family member of a person in the group. This legislation would also ban health insurers from invoking a preexisting condition exclusion on the basis of genetic information. Further, bills would ban the use of genetic information for underwriting purposes or determining eligibility for health insurance.
In addition to restricting health insurers' collection and use of genetic information, the pending legislation addresses privacy concerns related to genetic testing by expressly prohibiting the use or disclosure of genetic information for underwriting purposes as well as the collection of genetic information prior to enrollment.
The proposed legislation is specifically focused on the health insurance market. However, the committee reports highlight a concern that people will not participate in genetic testing or research without these legislative protections. This legislation, therefore, may the first step towards broader prohibitions on the use of genetic information in the insurance market.