Local libraries will spearhead a project to explain how discoveries of the Human Genome Project will affect people's lives in a pilot program that is expected to be expanded nationwide.
The North Suburban Library System has received a $222,000 grant from the U.S. Department of Energy to create programs in libraries to bring genome project information to the public. Planning begins next month for programs at 10 NSLS libraries.
Specific libraries have not yet been selected.
Scheduled to debut next spring, the programs will cover the benefits of genetic research and address many of the controversial ethical, legal and social issues surrounding it. They will then be made available as model programs to libraries throughout the country.
Completion of the first survey of the entire human genome was announced in June.
At that time, leaders of the Human Genome Project and representatives of Celera Genomics, a biotechnology company, announced completion of a working draft of the DNA sequence of the human genome. That information allows scientists to identify 90 percent of the genes on every chromosome.
Explaining the implications of this breakthrough is where libraries are expected to play a role.
Begun formally in 1990, the U.S. Human Genome Project is a 13-year effort coordinated by the U.S. Department of Energy and the National Institutes of Health.
To distribute the information to the public, the government dedicated 3 percent to 5 percent of the project's budget to public information.
"People need to know how this information affects their lives," said Miriam Pollack, NSLS assistant director and author of the grant proposal.
The Wheeling-based NSLS is an organization of more than 650 libraries in Lake County, as well as portions of Cook, Kane and McHenry Counties.
"It matches the perfect role of public libraries: to present all sides of the information and help people make informed decisions that help them in their personal lives," Pollack said.
The two-year grant project, titled "Democratizing Human Genome Project Information: A Model Program for Education, Information and Debate in Public Libraries," will unite genetic experts and library staff to develop public programs, exhibits, bibliographies and Web sites.
Brochures in English and Spanish, focus groups, discussions, debates and presentations will be part of the library programs. Genetics experts will share their insights in panel discussions.
"It is so important that the public and clinicians be informed. These are not new issues, but the new research increases the number of [medical] tests available," said Mary Mahowald, a PhD and professor of obstetrics/gynecology at the University of Chicago. She has written one book, and is working on a second, about genetic issues.
"What is different and complicated about genetics research is that the testing not only affects individuals, but their family members as well," Mahowald said.
If a woman tested positive in a genetic test for a propensity for breast cancer, for example, should she have a breast removed now?
"Issues that become increasingly problematic include insurance coverage, employment discrimination and the discrepancy between people who can afford the tests and treatment and those who cannot," Mahowald said.
"The libraries are not advocating any one decision," Pollack said. "People need to have all the information to make informed decisions, and to understand the implications of this research."