The goal of this two-year project is to uncover issues related to genetics testing among the Native American populations of the Midwest. A project of this nature cannot be merely culturally sensitive but must be firmly embedded within the belief system of those who will be involved with and most affected by the proposed research testing. Groups and individual elders will be asked to comment on their concerns as they relate to a modern research topic through traditional activities.

One of the primary motivations for parents to participate in BRCAI/2 testing is to find out about their minor children's risk of developing cancer. However, parents often report feeling distressed and conflicted about sharing this information with their youngsters once it is available. As few parents receive professional guidance in evaluating the potential risks and benefits of disclosure to children, parents may be prone to make ineffective decisions about communication that could lead to adverse psychosocial outcomes.

The overall goals of this project are to increase understanding of the nature, distribution, and correlates of trust and distrust related to predictive genetic testing and to investigate the relationship among trust/distrust, attributes of a genetic test and its delivery, and willingness to undergo predictive genetic testing. In our preliminary conceptual model, trust and distrust related to predictive genetic testing are multidimensional constructs that encompass beliefs about whether or not a predictive genetic test will be used in one's best interest.

Clinicians and patients often seek to determine the cause of disease, particularly when they believe that knowing the cause will affect management. Both scientific and public media, with their focus on genetics and the promise of individualized medicine, have heightened expectations that greater understanding of genetic information will improve health outcome.

We propose to develop, implement, and evaluate a web-based curriculum on the ELSI related to genetics for primary care residents in internal medicine and pediatrics. Over three years, we will build a web-based curriculum on ELSI issues related to genetics with a series of case-based modules. We emphasize the integration of genetic concepts into primary care practice, guiding residents to those concepts that build on established primary care practice, and those, which represent novel approaches to care delivery.

This research aims to improve understanding of the Asian and Pacific Islander population in Hawaii participating in the Hemochromatosis and Iron Overload Screening (HEIRS) Study, and in turn our understanding of minority participants' reactions to and understanding of genetic testing. Using terms most suitable to the purpose and context of research as opposed to administrative categories for race and ethnicity has been recommended for public health research.

Recent rapid developments in genetic medicine are creating the expectation that genetic assessments will soon become integral to routine health care. Yet while such practices stand to have far-ranging clinical implications, little empirical attention has been devoted to understanding the processes or consequences of incorporating genetic testing into routine diagnosis and management procedures.

The impetus for this proposal began with the decisions to include a Southern European population sample in the new Haplotype Map Project (HapMap Project) and to undertake this research among identified populations through a process referred to unofficially as 'community engagement.' Together, these two tracks led more specifically to the P.I., an American medical anthropologist who had lived and conducted research for many years in Florence, Italy.

This project will engage members of Indian communities in the Houston metropolitan area to elicit their perspectives on genetic research and the International HapMap Project.

This proposal rests on the assumption that rapid expansion of large sample gene discovery and disclosure projects raise major ethical, legal, social and policy challenges, to such an extent that it constitutes a significant and urgent public health need. Recognizing the urgency of these challenges, and drawing on three unique projects at UNC-CH involving large-sample gene discovery and disclosure, we request funding for a two_year Exploratory (P20) grant to conduct the planning necessary to create a Center of Excellence on ELSI Issues in Large Sample Gene Discovery and Disclosure.