Potential for Discrimination Debated in Wake of Genome Breakthrough

Issues in Science and Technology, Fall 2000 | Go to article overview

Potential for Discrimination Debated in Wake of Genome Breakthrough


On June 26, the Human Genome Project announced that approximately 85 percent of the entire human genome had been sequenced, laying out a draft road map for future research into potential therapeutic applications. On July 20, the Senate Health, Education, Labor, and Pensions Committee held a hearing to discuss the project, particularly one of its potentially adverse impacts: discrimination against individuals with potential and perceived disabilities by employers and insurance companies.

Francis Collins, director of the National Human Genome Research Institute at the National Institutes of Health (NIH) and head of the effort that produced the sequencing breakthrough, testified that although genetic research holds great promise, it can "also be used in ways that are fundamentally unjust.... Already, with but a handful of genetic tests in common use, people have lost their jobs, lost their heath insurance, and lost their economic well being due to the unfair and inappropriate use of genetic information."

Both Collins and Senate Democratic Leader Tom Daschle (D-S.D.) provided examples of individuals who had been discriminated against on the basis of genetic disease traits that they carried. "As the use of genetic tests increases," Daschle said, " the number of genetic discrimination victims will increase unless we specify--clearly and unambiguously -- how genetic information may be used and how it may not be used."

Not only is potential discrimination at issue, but also the future of genetic research if people opt out of participating in studies because of fears that the information will be misused. "This is not a theoretical concern," Craig Venter, president of Celera Genomics, a private firm involved in sequencing the genome, said in a letter to Daschle. "Today, people who know they may be at risk for a genetic disease are forgoing diagnostic tests for fear they will lose their job or their health insurance."

Daschle, in conjunction with Sens. Edward Kennedy (D-Mass.), Christopher Dodd (D-Conn.), and Tom Harkin (D-Iowa), has introduced the Genetic Nondiscrimination in Insurance and Employment Act (S. 1322). The bill would ex tend to the private sector the same protections that government employees have under Executive Order 13145. The bill would make it illegal for an employer to discriminate against job applicants or fire employees on the basis of genetic information, prohibit disclosure of an employee's genetic information without prior consent, and allow employees the right to sue for discrimination in court. …

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