June 24, 2004 (REVISED Yes) American Folklife Center at Library of Congress and Partners Receive Human Genome Project Grant

Funds to Support Development of Oral History Interview Kit

Press Contact: Helen Dalrymple (202) 707-1940 | Peggy Bulger, American Folklife Center (202) 707-1735;
Contact: Shalom Staub, Institute for Cultural Partnerships (717) 238-1770

The Health Resources and Services Administration, part of the federal Department of Health and Human Services, has awarded $400,000 for a project proposal that the American Folklife Center submitted in collaboration with the Institute for Cultural Partnerships, the American Society of Human Genetics and the Genetic Alliance.

The "Healthy Choices Through Family History Awareness Project" aims to increase awareness and understanding of the ways that family history may influence personal health. The project will use an oral history approach to increase the understanding of genetics in underserved communities. By eliciting health-related narratives, researchers hope to uncover potential risk factors that might be overlooked in standard medical histories and could influence health care decision-making.

"The family history tool will create a way to explore and expand knowledge of one's extended family, with particular attention to health and illness," said American Folklife Center Director Peggy Bulger. "It will assist individuals and families to preserve data on family medical histories in a manner that can provide future generations with relevant family health information."

In the initial phase of the project, a team of folklorists, applied anthropologists and genetic health specialists will work with low-income African American and Latino communities in the Allison Hill area of Harrisburg to develop and field-test a family history tool. This effort will be coordinated by the Institute for Cultural Partnerships (ICP), which is based in Harrisburg. ICP has worked with local communities on the cultural dimensions of successful health services; ICP Director Shalom Staub is the principal investigator for the project. "This is an exciting opportunity to link the knowledge of family stories and traditions to the cutting-edge field of genetic health research," said Staub.

Medical research has made tremendous advances in understanding genetic influences on disease, and common conditions including alcoholism, certain cancers, heart disease, diabetes and schizophrenia are now increasingly understood in relation to genetic factors. With greater understanding of genetic risk factors, individuals can make changes in lifestyle or medication that reduce the risk for adverse health outcomes. This opportunity is lost, however, on people who are unaware of their family history.

Ethical, legal and social issues surrounding the collection and storage of genetic information, and the protection of privacy related to the collection of such information, are significant considerations in the design and implementation of this project. The adverse effects of disclosure of increased risk for a serious health problem may have serious implications for employment, insurance and, in some communities, marriage prospects. The genetic information gathered in this project is totally confidential and will remain in the hands of family members.

The American Folklife Center at the Library of Congress was created by Congress in 1976 "to preserve and present American Folklife." The center incorporates the Archive of Folk Culture, which was established at the Library in 1928 as a repository for American Folk Music. The center and its collections have grown to encompass all aspects of folklore and folklife from America and around the world.

The Institute for Cultural Partnerships is a private nonprofit organization whose mission is to help individuals and communities to live, learn and work successfully in an increasingly diverse society. ICP's work creates ways for people to understand their own culture, particularly as a resource for economic, educational and health concerns; understand others; develop positive inter-group relations; and build strong communities.

The American Society of Human Genetics (ASHG), is the primary professional membership organization for human geneticists in the Americas. The principal objectives of ASHG include providing venues for investigators in human genetics to share their research findings and facilitating interactions between geneticists and their peers in policymaking, industry, education and advocacy.

The Genetic Alliance is the nation's leading support, education and advocacy organization for those with genetic conditions. Encompassing more than 600 disease advocacy groups and professional organizations and representing health care, research, industry and policy communities, the alliance is the largest worldwide genetics coalition. Its mission is to educate the public about genetics and promote healthy lives.


PR 04-102
ISSN 0731-3527