In the final session, panelists lead the charge for establishing a community of practice that is best able to share experiences across programs. Topics include key data elements, reporting and sharing, promoting equity through knowledge sharing, and ensuring program sustainability. This session is be forward-looking, and we hope it generates ideas for building a community of health services researchers, program directors, clinicians, and ELSI researchers who care about promoting ethical implementation of population genomic screening.
This renewal project, conducted by a consortium of three universities (University of Michigan, Michigan State University and Tuskegee University) will develop a process for engaging minority populations of diverse socioeconomic levels in the process of rational democratic deliberation on moral and political issues relating to genome research and its resulting technology, and will develop recommendations for laws, professional standards and institutional policies regarding the use and application of genome research and technology.
This 3 year project intends to modify existing genetics education curricula to create culturally competent education interventions (i.e., independent modules and a 20-hour comprehensive intervention) which will be targeted to the Native American college and university students, and to educators who teach Native Americans.
This project will bring together an interdisciplinary working group of scholars to explore these questions. During a three year period, it will meet to develop the language, criteria, and conceptual framework for exploring issues related to genetic variation research and social identity. Specifically the project will address ways in which the information emerging from research into human genetic variation may affect three overlapping domains: concepts of identity and authenticity; concepts of identity and community; and concepts of identity, family, and kinship.
This is a qualitative, ethnographic study that is designed to generate a number of empirical examples of community review in action.
The goal of this project is to collect cell samples from 40 trios of Mexican-American background for NHGRIs HapMap project, with cells being deposited at the Coriell Institute for Medical Research. This will be done after extensive community consultation and engagement. This effort builds on our recent experience in developing community consultation and sample collection in the same population for the NIGMS Human Genetic Cell Repository at the Coriell Institute.
Hispanics are the most rapidly growing ethnic group in the U.S. There are 35 million Hispanics in the U.S., including 20 million Mexican- Americans. This represents 12.5% and 7.3% of the total U.S. population, respectively (Census 2000). The long-term objective of this proposal is to develop future educational programs in genetics for U.S. Hispanics, particularly those of Mexican descent. In order to prepare for that long-term goal, two specific aims will be addressed in this application: (l) To survey the educational needs of Hispanics/Mexican-Americans in the area of genetics.
As a part of their work on the U.S. Human Genome Project, NHGRI has produced a multimedia educational kit, The Human Genome Project: Exploring our Molecular Selves. The kit (which could only be ordered online) is intended to reach a wide variety of audiences including high school biology teachers and students as well as other educators, scientists, healthcare professionals, and college students.
This project is designed to promote public understanding of the social, ethical and legal implications of research on genetic susceptibility to environmental toxicants. In recognition of the potential impact of genetic science developments in the 21st century, the investigators propose a broad partnership of schools, unions and workers, scientists, and minority communities to develop a forum to share views on socio-ethical issues related to gene-environmental research and to educate all parties on these views.