Ethics of Dissemination: Communicating with Participants about Genetics Research

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DESCRIPTION (provided by applicant): Biomedical research involving humans generates results that fall on a continuum of potential interest to participants. Some results, such as blood pressure, have obvious clinical utility, and elevated blood pressure is actionable by taking blood pressure medication. At the other end of the continuum, results from research on the genetics of complex diseases holds great promise for future clinical management; however the results are not immediately actionable and may only be of scientific interest. Research scientists conducting Community-Based Participatory Research (CBPR) have an obligation to communicate research outcomes without implying more benefit than is actually present, and a unique opportunity to elucidate how this obligation can be met in studies that generate genetic research results. The proposed study seeks to determine how to communicate research results ranging from conventional clinical measures to genetic and genome-scale research findings within an established CBPR project conducted by the Center for Alaska Native Health Research (CANHR) at the University of Alaska Fairbanks. The CANHR study is a CBPR project partnering with >1,300 Yup'ik Eskimos and their health care providers at the Yukon Kuskokwim Health Corporation (YKHC) in Southwest Alaska. The CANHR study is focused on the identification of, and interaction among, genetic, behavioral, and nutritional risk factors that lead to obesity, diabetes and cardiovascular disease in Yup'ik Eskimos. In collaboration with investigators at the Center for Genomics and Healthcare Equality at the University of Washington, we propose an interdisciplinary partnership that will establish a Community Planning Group (CPG) of Yup'ik Eskimo representatives to collectively define a culturally meaningful framework that categorizes CANHR results, as well as to determine a communication plan that matches dissemination activities with research result categories. The framework and communication plan will be refined through an iterative series of consultations with the CPG, Yup'ik leaders with research expertise, and health care providers and health care promotion program leaders at the YKHC. We will then test the portability of the framework and associated communication strategies in an HMO research setting. In addition, all research partners will meet with a select group of stakeholders having expertise in CBPR, education, and genetics research at the beginning and end of the study to provide input and feedback based on their own unique research contexts and experiences. Finally, we will develop a guide that is based on the results of our collaborative studies, to assist other researchers and community partners in determining an appropriate plan for communicating research results. Public Health Relevance: The long-term potential for genetic and genome-scale research to contribute to health care delivery and disease prevention is high, but most current results have limited clinical utility. Although research participants generally express interest in receiving research results, little is known about what they would consider meaningful communication about complex genetic research, the research process and questions it seeks to address, or actual research findings. This study will use community-based participatory research methods to develop a framework for defining different categories of research results and appropriate communication plans, assess the generalizability of the framework, and develop a guide that can be used by other researchers seeking to develop appropriate strategies for returning complex research findings to participants.