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Sign In Forgot password? Don't have an account? Who want to assist people from racial and ethnic minority communities in understanding the risks and benefits of participation in medical and public health research so that they can make an informed decision about participating in research studies. As a researcher interested in this topic, we encourage you to review the Building Trust site and make use of its resources to support these goals relative to your community and your research. The site was designed to be viewed sequentially but each Unit may also stand on its own and users may also like to explore on their own, following their own interests.
This site may be viewed individually or in groups, but we encourage facilitated viewings for groups which allow for time for discussion and reflection.
Building Trust: Doing Research to Understand Ethnic by Fumiko Hosokawa - radostek Books
For this reason, each page ends with a discussion question. The questions are designed to be a starting point of discussion about the information on the page. A primary goal of Building Trust is to bridge the gap between communities impacted by health disparities and researchers, and we invite you and potential community partners to use this site to start a dialogue.
The Building Trust site was designed to give the lay person basic knowledge about research beginning with Unit 1: The materials is this program have been used specifically to train members of community advisory boards CAB but there are many other ways the Building Trust Site can be used to build capacity for anyone beginning a relationship with research in their community — as a participant, community member of an IRB board, or as a worker in a specific project.
Whatever their role, the Building Trust site is designed to provide them with the knowledge they need to effectively work with researchers. Research staff, those involved in community outreach and recruitment, will benefit from exposure to the voices of community members that are featured through the Building Trust site. Informed Decision-Making also has important information about research abuses in the past, which will help research staff put their outreach efforts into an appropriate context for the respectful engagement of minority communities.
The entire Building Trust site has information to help people get a better understanding of research and its potential to help communities and individuals.
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- Building Trust: Doing Research to Understand Ethnic by Fumiko Hosokawa.
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Informed Decision-Making, however, has specific information that may empower individuals during the informed consent process. Our research has shown that participants do not always fully understand informed consent even after they have been through the process. These resources are directly designed to help to empower community members who are considering participation in a research study. The Building Trust website can be used to build relationships with communities before the implementation of a research project as a way of building a reciprocal relationship based on open dialogue about research.
Similarly, some groups may have distinct perspectives on the role and purpose of research.
Not all Americans are born equal.
Hosokawa find that some groups in her study, quite rightly, expressed skepticism of research, fearing that it might stereotype or exploit their community. African Americans in the study, for example, expressed a heightened interest in participating in the research throughout the process, including interpretation of results. Although they viewed researchers with respect, Hosokawa's African-American respondents underscored that the research should not perpetuate stereotypes and should serve the needs of the community, not just the academy.
Mexican-American and Samoan respondents expressed similar wishes.
Doing Research to Understand Ethnic Communities
Mexican Americans were particularly interested in research that could contribute to the community and stimulate social change. Samoan Americans represent an interesting case. Hosokawa reports that many of her Samoan [End Page ] respondents were acutely aware of past research, such as that of Margaret Mead, which they said inaccurately and negatively portrayed Samoans. Of all the groups the author interviews, Samoans appear most sensitive to potential negative characterizations of the community through research.
Hosokawa suggests working extensively with Samoan community leaders before even designing a research question to ensure that this question will not unwittingly imply something harmful about this group. The key insights of the book revolve around such findings of unrecognized or mis-recognized differences across ethnic communities. These insights bring into question the accuracy of data collection in these communities and also seem to suggest how research representing ethnic and marginalized groups be tainted by unseen bias.
In the final chapter, Hosokawa suggests a method of overcoming these problems through building trust between the researcher and the participants.