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. In keeping with the process of 'engagement' of a community around the proposed research, the primary goal of this proposal is to 'actively involve' an identified population around Florence in socially, ethnically, and politically sensitive ways and to assure that recruitment of donors and the donation of blood samples preserve real possibilities of participation as well as non-participation. In so doing, the project also proposes to use this experience and research to reflect on how practices and understandings of informed consent and the ethics of genetic research could be broadened and improved in the United States. These goals will be pursued through 4 specific aims: 1) solicit and capture the range of responses to the proposal of participating in NIH-funded Haplotype genetic research among an identified population near Florence, among the 'excluded' populations, and among opinion leaders both in and outside of the catchment area; 2) investigate the current and past local, regional, national, and European ethical practices, protocols, and debates about research on genetic variation as a means of understanding what could be indications of """"""""socially and culturally appropriate"""""""" ways of conducting such research in the local situation; 3) present the target population the possibility of giving up to 130 blood samples for the Haplotype Map, and collect and send the donated samples to Coriell Institute following their protocol; and 4) use the comparative context to contribute to the ongoing reflection and evaluation of the process, implications and genomic research ethics in the United States.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Biotechnology Resource Grants (P41)
Project #
3P41HG003085-03S1
Application #
7229651
Study Section
Special Emphasis Panel (ZHG1)
Program Officer
Mcewen, Jean
Project Start
2003-09-30
Project End
2008-08-31
Budget Start
2006-05-24
Budget End
2008-08-31
Support Year
3
Fiscal Year
2006
Total Cost
$119,642
Indirect Cost
Name
University of California San Francisco
Department
Social Sciences
Type
Schools of Medicine
DUNS #
094878337
City
San Francisco
State
CA
Country
United States
Zip Code
94143