Ethical and Cultural Implications of Specimen Banking Among Alaska Native People

Ethical and Cultural Implications of Specimen Banking among Alaska Native People is proposed by Principal Investigator Ruth A. Etzel, M.D., Ph.D. The aims of this project are to: 1) determine the feasibility of obtaining current addresses for Native persons with tissue stored in the Specimen Bank; 2) determine whether adequate informed consent was obtained from individuals whose specimens are stored in the specimen bank; 3) determine specific past uses of each participants? specimens and assess whether uses were consistent with participants? consent, if any; 4) conduct a pre- and post-survey among a sample of Alaska Native and American Indian people to find out their knowledge of and attitudes towards use of stored tissue specimens; 5) convene a small group of researchers with experience in community-based participatory research to learn from one another about strategies for success; 6) begin a dialogue with Alaska Native communities about the specimen bank, including its benefits and risks; 7) develop by consensus a guideline document on the operation and management of Alaska Native specimens in the specimen bank; 8) develop a model comprehensive consent form for the specimen bank; and 9) develop a method for periodic communications with identifiable participants in order to provide them with information about specimen bank activities and opportunities to consent. The project is significantly relevant to Southcentral Foundation?s mission of "working together with the Native community to achieve wellness through health and related services," and will help Alaska Native people to ensure that the specimen bank is ultimately used to answer their questions about their health. The project is relevant to NARCH purposes and objectives of increasing partnership capacity to reduce distrust by Alaska Native /American Indian communities and people toward research, and of encouraging competitive research linked to the health priorities of the applicant organization in reducing health disparities. Alaska Native people have been subjected to unethical and dangerous research activities in the past, creating a communal sense of wariness about research and researchers. An estimated 84,500 persons have blood or tissue stored in the specimen bank, but many do not know or remember that they have samples stored there. Public health relevance: This project enhances future public health efforts by building trust and demonstrating that research using stored specimens will not be conducted without the informed consent of those who gave the specimens that are stored in the Alaska Area Specimen Bank. The project will build a longterm research partnership between Alaska Native American Indian people and health researchers.