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

Genetic Privacy Task Force Hears Testimony

The Task Force on health Records and Genetic Privacy, established in 1997 by the Commerce Committee of the U.S. House of Representatives, held its first meeting on July 22 in Washington, D.C. cochaired by Reps. Cliff Stearns (R-FL) and gene Green (D-TX), the eight-member bipartisan task force is considering the following issues as a prelude to establishing policy:

  • Effects on Americans of the many genetic tests created as a result of the Human Genome Project.
  • Impacts of genetic research on medical practices; disease treatment, cure, and prevention; and test availability
  • Potential misuses of a person's genetic and other information by employers and health insurers.
  • Risks to scientific research of addressing this potential misuse.
  • Legislative steps that could maximize the success of future research.

The July meeting took the format of a congressional hearing and lasted for 3.5 hours, with testimony by 12 witnesses. These witnesses and members of several panels emphasized the importance of addressing genetic privacy within the context of all carefully protected medical records. Some argued for more awareness of the impact of policy decisions on research and against legislation that permits retrospective destruction of DNA samples or records. One panel consisted of representatives of the health-insurance and pharmaceutical and biotechnological research industries. These speakers generally supported legislation to protect individuals from genetic discrimination and opposed efforts to separate genetic information from other medical records. They also favored broad medical-record confidentiality that protects medical research, has different standards for nonidentifiable data, and contains appropriate informed consent.

A second meeting of the task force is planned for early in 1998. [Information contact: Rep. Stearns' office (202/225-5744, Fax: -3973)]

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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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