This proposal seeks to build on 4 years of funded work on the ethical, legal, and social implications (ELSI) of genetic research in American Indian and Alaska Native (AI/AN) communities. In the course of that work, questions of trust have emerged with unique salience as American Indian and Alaska Native community members have expressed concerns with abusive treatment by researchers whom they characterize as primarily interested in self advancement and who, it is argued, have returned little of value to these communities that suffer so disproportionately from health disparities.

Probing Minority Views on Genetic Testing and Research Grant # F31HG004124 Grant period: 08/23/2006 - 08/22/2009 Minorities, particularly African Americans and Hispanics, are under-represented when it comes to utilizing genetic testing and participating in genetic research. Previous studies, largely survey-based, have noted this situation but have not explained the reasons for this disparity. My research program is geared toward understanding the views of minorities concerning genetic testing and concerning their participation in genetic research.

Psychiatric genetic research (PGR) holds great promise for preventing, understanding, and treating neuropsychiatric disorders - a source of immense societal burden and personal suffering. Such research poses many ethical challenges, and failure to perform systematic study of the ethical issues surrounding PGR may threaten societal acceptance of this important scientific work. To date, NIH has not funded any work on PGR that focuses on collecting empirical data about ethical issues.

Research is currently underway that seeks to deepen our understanding of the role of genetic factors in substance dependence and response to treatment. In order for the potential benefits of emerging research to be realized, it is crucial to begin understanding how members of different racial/ethnic groups comprehend, interpret and respond to information about the role of genetics in addiction and treatment response, and in particular to reported racial differences in the frequency of alleles hypothesized to increase susceptibility to addiction or affect response to treatment.

This project would address several questions concerning parental rights and responsibilities in forming families and the morality of using genetic technology to prevent or create children with impairments: 1) Are genetic impairments subject to greater concern than other alleged sources of harm to future children? If so, is that greater concern justified? 2) Do public attitudes, practices, and policies toward reproductive conduct take account of whether that conduct affects the identity of the future child? Should they?

Advances stemming from the Human Genome Project have prompted concerns about the general public's readiness to utilize this information to make informed health decisions. As a strategy to increase genetic literacy among the general public, tools are now available to enable individuals to record their family health history. However, little is known about whether the public is able to access the tools, understand how to use them, and apply the information by taking health protective actions, which can compromise the potential effectiveness of the tools.

Over the past two decades, forensic DNA profiling has become an important tool in the investigation of human rights abuse and genocide. There is, however, little understanding of the ethical, historical, political, psychosocial, or policy dimensions of this application of genetic technology. The lack of a well-developed body of relevant research, and few regulations to guide the implementation of humanitarian DNA identification projects, means that organizations and individuals must develop their own ad hoc rules and procedures for the identification process.

This application proposes to assess the societal impact of genetic tests offered directly to consumers (DTC) and to develop policy options for DTC oversight that will balance the benefits of promoting availability of tests that can have a positive impact on public health and preventing harm to the public as a result of misleading claims, inappropriate tests, or inaccurate test results.

This proposal requests funding to support an evaluation of existing regulatory frameworks and their appropriateness for the regulation of new probiotic products that are available in the market or will be available in the near future.

The mapping of the human genome has allowed researchers to discover new relationships between genotype and phenotype, and has provided the basis for genome-informed medical decision-making that will lead to diagnoses and therapies that are targeted, have reduced variability, maximize efficacy, and minimize adverse effects. As information of greater health significance is generated by genomic research, there is an emerging consensus that the ethical return of genomic information will be needed.