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Human Genome News, July-September 1996; 8:(1)

Genetic Privacy and Property: Perspectives from Capitol Hill

Genetic information is highly personal and unique. The potential for its misuse threatens to penetrate many aspects of life, including employment, insurance, law enforcement, finance, and education. "Social policy needs to keep up with Human Genome Project discoveries," said U.S. Rep. Louise Slaughter (D-NY), participant in the 1996 Cape Cod working conversation on genetics and cosponsor of H.R. 2748, a bill that would outlaw health-care discrimination based on genetic information.

"Everyone is vulnerable. We are drafting laws to make sure people will not be left behind," she said. Slaughter believes an individual's right to privacy and control will be recognized as a new civil right.

Privacy Law

Dan Freeman (Committee on the Judiciary staff, U.S. House of Representatives) summarized recent congressional activity to protect genetic information. Several bills calling for uniform national standards have been introduced in Congress; H. R. 3103, the Health Care Insurance Portability and Accountability Act of 1996, was signed into law in August. It prohibits the use of genetic information in certain health-insurance eligibility decisions and requires the Department of Health and Human Services to establish standards in preparation for enforcing the health information privacy provisions.

"We have the opportunity to protect human rights before technology overwhelms us," Freeman said, "and we may be a bit ahead of the curve. The challenge is to minimize the harms."

Employment Protection

Last year the Equal Employment Opportunity Commission (EEOC) issued guidelines regarding genetic discrimination under the Americans with Disabilities Act [HGN 7(2), 4]. Speaking at the meeting, Peggy Mastroianni, EEOC Associate Legal Counsel, noted that the commission's interpretation still leaves gaps that the courts will be asked to fill.

Patenting Issues: Biotech Controls

What role should the federal government have in biotechnology issues? Tom Mooney (Committee on the Judiciary staff, U.S. House of Representatives) discussed controversies over patenting genes and products of genetic recombinant technology such as animals harboring foreign genes. "The science is intermingled with politics, business, and the nation's economy," he said, noting over $9.3 billion in annual sales by 1300 U.S. biotechnology companies. Mooney also acknowledged public concern over unique ethical, religious, and safety issues related to biotechnology.

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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.

Human Genome News

Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.