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Human Genome News Archive Edition

Human Genome News, January 1998; 9:(1-2)

Legislation Sought Against Gene Bias

On January 20, 1998, Vice President Al Gore called for federal legislation to bar employers from discriminating against employees on the basis of their genetic makeup. “Progress in genetics should not become a new excuse for discrimination,” Mr. Gore said. “Genetic discrimination is wrong—and it’s time we ended it.”

The Vice President also released an administration report, "Genetic Information and the Workplace," which documents problems of current and future genetic discrimination in the workplace and outlines principles for federal legislation to guard against these abuses (see information at end of this article). Such legislation would forbid employers to request or require genetic information, prevent on-the-job discrimination, and ensure that genetic information is not disclosed without the explicit permission of the individual.

Workplace Report
The report states that more and more employers are using genetic testing and monitoring as a condition of employment. One study found that by the year 2000, 15% of employers plan to check the genetic status of prospective employees and their dependents before making job offers. The report also notes that genetic information already is being used to discriminate in the workforce. In addition to numerous individual cases of discrimination, nearly one-fifth of people who have a family member with a genetic disorder reported being discriminated against by employers, insurers, and others.

A 1995 Harris poll revealed that over 85% of Americans are concerned about insurers or employers having access to their genetic information. Another study showed that many high-risk people refuse to take advantage of new genetic tests for fear of losing their jobs or their insurance.

Legislative Protection
Although 14 states have widely varying laws to provide some protection against workplace discrimination, the need for federal protection has been recognized by Congress with the introduction of numerous bills with bipartisan support. Three stand-alone bills would amend existing civil rights or labor laws to protect workers against employment discrimination based on genetic information (S. 1045, Sen. Tom Daschle; H.R. 2275, Rep. Nita Lowey; and H.R. 2215, Rep. Joseph Kennedy). Two additional bills include worker protections against discrimination based on genetic information as part of broader proposals addressing the use of genetic information (S. 422, Sen. Pete Domenici; H.R. 2198, Rep. Cliff Stearns).

Health Insurance
In July 1997, President Clinton urged Congress to pass laws prohibiting health-insurance companies from discriminating against individuals on the basis of information contained in a genetic test or even the request for a genetic test. He endorsed H.R. 306, introduced by Rep. Louise Slaughter (D-NY). The comparable Senate bill, introduced by Sen. Olympia Snowe (R-ME), is S. 89. [Related article, HGN 8(3&4), 1-3.]

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Human Genome Project 1990–2003

The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.

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