Lawmakers consider nondiscrimination measure

Federal lawmakers will again consider a proposed federal standard that would prohibit all companies and health insurers from using genetic information to preclude health coverage or employment — the measure would supersede a patchwork of varying state laws covering use of genetic information by employers and insurers.

The bill, H.R. 602/S 318, known as the Genetic Nondiscrimination in Health Insurance and Employment Act, introduced in the House by Rep. Louise Slaughter (D-NY) and in the Senate by majority leader Tom Daschle (D-SD), would prohibit health insurance and employment discrimination against individuals and family members based on predictive genetic information or genetic services.

Health information professions and medical ethicists have long argued that such federal legislation is important to protect patients’ vital privacy rights and prevent widespread discrimination. Although the Health Insurance Portability and Accountability Act (HIPAA) of 1996 prohibits the release of individually identifiable patient information without the patient’s consent, critics have argued that some breaches of confidentiality are inevitable and employers and insurers must be prohibited from using genetic test results and information that may be disclosed as criteria for denying employment or health coverage.

A similar bill, proposed last year, did not make it to a vote in both houses. "Health information confidentiality must be extended to all health information," says Linda L. Kloss, MA, RHIA, executive vice president and CEO of the American Health Information Management Association in Washington, DC, in a statement announcing the organization’s support for the new legislation.

"The current piecemeal approach — consisting of state laws and regulations, presidential executive orders, and the final HIPAA regulation — establishes standards for the privacy of health information that leaves too much information, especially paper-based and nongenetic, unprotected. Comprehensive federal legislation governing the handling of all health information would create a single law of the land and be effective in protecting the nation’s health information."

History of discrimination exists

There is historical evidence to support the fear that, unless a law like this is passed, people will suffer discrimination based on their genetic information, says Slaughter. Several studies have indicated that some companies screen prospective employees and that genetic monitoring occurs in some large businesses, she notes in a statement on her web site in support of the legislation.

"From the 1960s until 1993, the Lawrence Berkeley National Laboratory secretly tested black employees for sickle cell anemia, until workers filed a lawsuit that resulted in a 1998 decision by the U.S. Ninth Circuit Court of Appeals that this practice was unconstitutional," she notes.

In addition, during the late 1990s, a study conducted by Northwestern National Life Insurance found that by the year 2000, 15% of employers planned to check the genetic status of prospective employees and dependents before making employment offers. A survey of members of genetic support groups with a variety of genetic conditions indicated that 22% believed they had been refused health insurance because of their conditions, and 13% reported denial or dismissal from employment because of their conditions. Between 17% and 18% had deliberately not revealed genetic information to insurers or employers.

The current bill was introduced in both houses on Feb. 13, 2001, and currently is under review by the House Committees on Ways and Means, Education and Workforce, and Energy and Commerce, as well the Senate Committee on Health, Education, Labor, and Pensions.