 | The 131st Annual Meeting (November 15-19, 2003) of APHA |
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| The 131st Annual Meeting (November 15-19, 2003) of APHA |
Megan L. Fong, BA1, Mei-Ling Chang2, Kathryn Braun, DrPH3, and JoAnn Tsark, MPH1. (1) `Imi Hale Native Hawaiian Cancer Network, 894 Queen Street, Honolulu, HI 96813, (808) 597-6558, mfong@papaolalokahi.org, (2) Hui No Ke Ola Pono, 95 Mahalani Street, Suite 21, Wailuku, HI 96793, (3) Public Health Sciences and Epidemiology, University of Hawaii at Manoa, 1960 East-West Road, Biomed. D-203, Honolulu, HI 96822
Background/Purpose: Increasingly, genetic and biomedical researchers are using human tissue samples obtained and stored during clinical care or previous research studies. Many protocols involve Native Hawaiians, which comprise 20% of Hawaii’s population, because of their severe cancer health disparities. Because genetic research may incur individual or group harm and may violate traditional Native Hawaiian beliefs about the sacredness of tissue and body parts, community preferences should be considered. Study Design: In this cross-sectional study, participants read research scenarios and expressed preferences for informed consent and dissemination of results from research using stored biological samples. The data collection instrument was adapted from a survey administered to a national sample by NIH. Population/Setting: We surveyed 500 Native Hawaiians affiliated with Native Hawaiian community-based health organizations on five islands. These organizations serve more than 10,000 Native Hawaiians a year. Analysis: Data were managed and analyzed using SPSS-PC. Means and frequencies were calculated and compared against findings from the study by NIH that included a national sample. Findings: Data suggest that Native Hawaiians would like to be re-consented for research involving stored biological samples, especially if the new research has a genetic component. Conclusions: Native Hawaiian preferences differ from those found in a national sample comprised predominantly of Caucasian and African Americans. Implications: Researchers should consider the community viewpoint when formulating policies and guidelines for this type of research. Acknowledging preferences may enhance cultural sensitivity of research protocols.
Learning Objectives:
Keywords: Native Populations, Research Ethics
Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.