The goal of this project is to explore the range of ethical, legal, and social implications of genetic research and health services with Indian and Native peoples. These issues have proven to be intensely controversial in some quarters and the intent in this proposal is to explore areas of common ground and possibility for compromise between Indian and Native communities and genetic researchers.

Multiple elements contribute to the successful translation of genetic advances into improved health outcomes. This project will address these elements through analysis of a series of genetic testing case examples.

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.

Over the past decade researchers, institutions and research sponsors have engaged in various forms of discourse with minority and indigenous populations in the US and abroad. These "community consultations" are an increasingly common adjunct to genetics research, particularly for projects aiming to create a repository of tissues and information for use by multiple researchers, with numerous different protocols, over an extended time period. Millions of dollars are being spent on consultations.

The National Human Genome Center at Howard University seeks to establish the Center on Genomics and Social Identity in the African Diaspora. The mission of the proposed CEER is to increase understanding of the complexities surrounding social identity within the African Diaspora and its interface with genomics in the improvement of health and well-being.

SoundVision Productions, creator of the highly acclaimed, nationally distributed public radio documentary series The DNA Files (1998, 2001), seeks funding for production, marketing, distribution and evaluation of The DNA Files 3, a new series of five highly produced 60-minute radio documentaries, five, five-minute features, a multimedia website and promotional materials that will inform a diverse public about the important and complex implications of advances in genomics and systems biology.

Health information technology (HIT) is believed to be central to improving the quality and cost effectiveness of health care in the United States. As a result of recent major federal investment, the diffusion of HIT is expected to surge in the next five years. As HIT becomes widespread, it will be a potent source of detailed, population-level health information and provide new insights on how health care is delivered in the U.S. These databases will have significant value for research including genomics, comparative effectiveness studies, health services research, and clinical trials.

The long-term goal of this research is to develop multimedia technology and interactive instructional strategies to improve the effectiveness and efficiency of obtaining informed consent for human DNA and tissue biorepositories. Studies suggest that individuals do not sufficiently understand the information presented during biorepository consent processes, and that traditional consent processes pose resource challenges for large-scale biorepositories.

With the growing importance of biobank research, concerns have been raised about how to protect the interests of donors. The current ethics framework mainly focuses on protecting against risks to donors' welfare and to their privacy. However, there has been little systematic empirical, normative, or policy focus on the non-welfare interests of donors, i.e., concerns about the moral, societal, or religious implications of research using their donation that may affect their willingness to donate.