American Indians (Al) and Latinos suffer some of the greatest cancer-related health disparities in the US and are some of the least likely to participate in medical research. Barriers to participation include mistrust ofthe medical system, limited access to care, and limited culturally- and linguistically-appropriate resources. The Kansas Communities Cancer Disparities Network (KCCDN) was created in 2011 through a U54 Specialized Center-Cooperative Agreement to study and address cancer-related health disparities faced by rural American Indians and Latino communities. The current proposal, for a KCCDN Bioethics Policy Subcore (BPS), will capitalize on KCCDN's infrastructure and community connectedness. Long before KCCDN existed, researchers at KUMC were using community based participatory research (CBPR) methods to work with the Al and Latino communities to address pressing health concerns. Bioethics and biospecimen collection are issues that have come up repeatedly in community discussions. We propose the following specific aims: (1) To create a Bioethics Policy Subcore in the KCCDN Methods Core to develop, evaluate and disseminate future trainings, education and policies surrounding the informed consent process for biospecimen collection, use and disposal in both a clinical and research setting;and (2) To expand our current Community Health Worker Training to include how to respond to participant concerns regarding collection, use and disposal of biospecimens in both clinical and research settings. The BPS will employ CBPR to gather information about community members'current knowledge surrounding biospecimens collection and uses;collect information on what community members want to see in educational materials about the informed consent process for biospecimen uses;create and evaluate web-based and print materials to educate the communities on these issues;educate researchers and practitioners about ethical implications of collection biospecimens for future uses;and develop and disseminate policies for the informed consent process for biospecimen collection and use in these communities.
The Bioethics Policy Subcore for KCCDN develops and disseminates policies to guide practitioners on the issues of voluntary informed consent with regards to the collection use and disposal of biospecimens for clinical and research purposes among the American Indian and Latino communities in rural Kansas and surrounding areas. Better understanding of the communities'thoughts and perceptions about biospecimen collection, uses and disposal will help us effectively develop these policies and guidelines.
Showing the most recent 10 out of 18 publications
