PROJECT NARRATIVE When Americans interact with everyday technology such as mobile applications and websites, they leave behind digital footprints that can reveal a great deal about individual health. The proposed research will define the emerging ?health-relevant digital footprint? and evaluate consumer preferences around use of information from inside and outside the health care system.
PROJECT NARRATIVE This project is relevant to public health because achieving the health benefits of preventive gene editing research will depend on governance that is responsive to public concerns. This project is relevant to NHGRI?s mission because of the role that new genomic knowledge will play in the policy challenges that the research proposed here helps address.
Project Narrative There is much that is not yet known about the implications of microbiome-based diagnostic or screening test results and, similar to the early days of genetic testing, it is possible that existing laws and regulations that did not contemplate these technological advancements are not adequate to address concerns they raise.
PROJECT NARRATIVE We will undertake epidemiological, historical and mixed-methods analysis of nearly 30,000 eugenic sterilization requests processed by three U.S. states: California, North Carolina, and Iowa, between 1919 and 1974. Working with de-identified datasets and using methods we developed during the R21 phase of this project, we will estimate and compare population-based rates of sterilization according to gender, age, ethnicity, nationality, diagnosis, state, and time period.
The project is relevant to public health because it will explore the risks and benefits of nontraditional biological experimentation, which is currently conducted largely beyond the reach of external regulation, and consider what regulatory approach would best serve the public interest.
The Clinical Sequencing Evidence-Generating Research (CSER) consortium is a national multi-site research program funded by the National Human Genome Research Institute (NHGRI), the National Cancer Institute (NCI), and the National Institute on Minority Health and Health Disparities (NIMHD) that assesses the effectiveness of integrating genome sequencing into the clinical care of diverse and medically underserved individuals.
The proposed CWRU training grant in international research ethics builds upon and expands a highly successful international research training program, funded by the Fogarty International Center for a total of six years, and longstanding relationships with our overseas collaborating institutions. The training program includes trainees from Nigeria, Russia, and Romania in a Master's degree program in Bioethics and, in addition, offers one in-country certificate program per year.
Duke's Center for the Study of Public Genomics will gather and analyze information about the role of publication, data sharing, materials-sharing, patenting, database protection, and other practices that affect information flow in genomics research and development. Managing intellectual property and ensuring the preservation of a robust "scientific commons" could prove as difficult as or more so than the science and technology, and could have as large of an impact on what results are produced, who has access to them, and how fairly they are distributed.
In its first five years, the CWRU Center for Genetic Research Ethics and Law (CGREAL) explored a range of ethical, legal, and policy issues in the design and conduct of genomic gene-discovery research. We now propose to follow the trajectory of genomics into its "translational" phase, where its expanded research needs and higher clinical aspirations are creating new ethical, legal, and policy challenges.