文章基本信息

标题：Creating Research Capacity Through a Tribally Based Institutional Review Board
本地全文：下载
作者：Deborah J. Morton ; Joely Proudfit ; Daniel Calac 等
期刊名称：American journal of public health
印刷版ISSN：0090-0036
出版年度：2013
卷号：103
期号：12
页码：2160-2164
DOI：10.2105/AJPH.2013.301473
语种：English
出版社：American Public Health Association
摘要：Tribal groups work tirelessly to maintain sovereignty rights, preserving and upholding tribal authority and protection over their land, people, businesses, and health. Moreover, the conduct of health science research by outsiders has had its share of an unethical, misguided, and abusive past. Tribally based institutional review boards (IRBs) are addressing these issues in an effort to control new health science research, set their own research agenda, and protect their people in the same spirit as has been accomplished through the perpetuation of sovereignty rights. We describe the success of a tribally based IRB at creating new capacity for health research and enhanced levels of trust, including bidirectional cultural education between academic researchers and tribal IRB committee members. CONCERNS REGARDING THE conduct of scientific research within one’s community are universal. Nevertheless, according to Bozeman et al., 1 societies’ attempts to control research ethics have historically amounted to “disaster response,” with no preventive action. As a consequence, they have called for internal reform of and systematic research on institutional review boards (IRBs) and their operations. American Indian/Alaska Native (AIAN) communities have a long history of unethical scientific research, despite the existence of formal IRBs since the mid-1960s. The literature contains many examples of the exploitation of tribal groups by research scientists. Distrust of outside researchers continues to pervade tribal communities. A well-known contemporary example is the lawsuit between the Havasupai Tribe and Arizona State University, in which the tribe alleged that its members’ DNA was used without proper consent. 2 The case against the university, which was settled in 2010, plainly illustrates a crucial role for tribally based IRBs. Drawing on Bowekaty’s insider view of Indian Country as a former governor of Zuni Pueblo, Bowekaty and Davis 3 expertly describe the history and experience of hundreds of years of theft and lack of respect since first contact with Europeans in his recommendations on how to succeed in genetic research with AIAN people. The list of breaches is well-known to tribal communities and mainstream society but remains startling when presented in such a straightforward manner: theft of land, culture, language, children, sovereignty, natural resources, artifacts, and ancestral bones and native symbols, as well as lack of respect for values, culture, tribes, elders, individuals, religion, and sovereignty. From this perspective, avoiding participation in research would seem the only reasonable response for the individual as well as the larger tribal community. However, a contemporary generation of AIANs, many of whom have become research scientists themselves, is helping to precisely define and share cultural information that will delineate fresh ideas and encourage collaborations to bring much-needed evidence-based research to tribal communities that experience serious health disparities. 4–6 Along with Bowekaty and Davis, 3 Burhansstipanov et al. 7 have provided a clear list of reasons why tribal members are disinclined to be “guinea pigs,” including the following beliefs: researchers cannot be trusted; researchers receive career advancement and tribal communities get poorer; researchers are disrespectful of cultural practices; researchers feel that tribally based organizations are too unstable to be reliable partners in research; results are not shared with the tribal community; studies are actually designed to harm Indians; participation in disease studies may cause that disease to manifest in one’s family or community; benefits of a study rarely reach tribal members; when the study results are presented to the community, they are too technical to be understandable. Besides constituting priceless cultural information, these insights provide a road map for conducting successful scientific research in Indian Country.