Skip to main content

The goal of this revised proposal is to illuminate the relationships between genetic researchers and racial/ethnic groups. Specifically, it seeks to understand how and why investigators link genetic diseases to named populations; how community organizations respond to genetic research and disease linkages; and to stimulate a dialogue between genetic researchers and community organizations on social risk, community consultation and informed consent.

No single research tool has played a more significant role in genetics and genomics research and development than the genetically engineered research mouse, so it is not surprising that no other research tool has so often been at the epicenter of tension between the ethos of sharing and the commercialization of intellectual property.

The long-term objective of this project is to expand the dialogue on the Ethical, Legal, and Social Implications of genomic medicine to include ethnic and racial minorities. The specific aims of this study are --1) To identify the major perceptions and concerns of the Muslim community in the Washington DC area regarding genetics and genetics technologies, and 2) Based on these perceptions/concerns, to define an approach to involve the Muslim community in a dialogue regarding the applications of genetic technologies and its implications on public health.

The completion of the human genome project, the creation of unique genetic research resources, and the development of robust genome analysis technology, have provided powerful tools to unravel the genetic contribution to health and disease. Yet, many human diseases are the product of complex interactions between genes and environment. The NHGRI and government advisors have identified the creation of a U.S. longitudinal study to collect environmental exposures, genetic risk factors, lifestyle, and medical experiences from hundreds of thousands of Americans as uniquely valuable.

The post-genomic era is characterized by a strong and growing need for bioinformatics software tools designed to analyze and organize structural and functional genomic information. Intellectual property protection and licensing practices are expected to have a profound impact on the creation, distribution and utilization of bioinformatics software tools. In the bioinformatics community, there are differing views on how to best promote the creation and distribution of bioinformatics software.