PROJECT NARRATIVE The goal of the biennial ELSI Congress is to provide a dedicated, regularly scheduled meeting for researchers focused on the ethical, legal and social implications of genetic and genomic research and its translation into clinical care.
PROJECT NARRATIVE Preparation is often cited as a reason for offering and for accepting prenatal genetic screening and diagnosis. However, this term has no clear definition, and thus it is impossible either to prove benefit or to recommend best practices.
The proposed R25 Research Education Program is devoted to building a 15-month research mentorship program at the Johns Hopkins Berman Institute of Bioethics (BI) for students from diverse, underrepresented groups and backgrounds, to help diversify the pool of ELSI researchers and thus enrich scholarship in genomics and society studies. Trainees will learn research skills, build networks, and gain exposure to the range of possible training and career options in ELSI research.
PROJECT NARRATIVE The goal of this study is to study the effect of COVID-19 on prenatal healthcare delivery, specifically patients' ability to access prenatal genetic screening and diagnostic tests in an informed and evidence- based fashion. By doing so, we will identify whether serious short term health issues for women, children, and families are resulting from the pandemic and develop readily-deployable and scalable solutions to ensure women's informed access to high-quality prenatal care during future public health crises.
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.
Project Narrative. Advances in psychiatric, neurologic and behavioral (PNB) genetics have brought the prospect of predictive and diagnostic genomic testing for many PNB conditions closer to clinical application. The potential for such findings to profoundly affect core elements of personhood?including identity, perceived responsibilities, and life trajectories?makes it essential to understand the impact of such information on individuals and families.
This application is for a 5-year competitive continuation of a project originally funded by the National Human Genome Research Institute's Ethical, Legal, and Social Implications Research Program entitled the "Parent Communication Study" (PCS). The goals of PCS were to determine rates of parent communication about maternal genetic test results for hereditary breast-ovarian cancer risk (BRCA1/2 genes) to minor-age children, and to characterize these decisions and outcomes.
The annual meeting of the American College of Medical Genetics (ACMG) brings together a large proportion of basic and clinical investigators of rare genetic diseases. The organizers propose a series of workshops to be held in conjunction with ACMG meetings to consider issues related to identifying needs and opportunities for collaborative research involving rare genetic diseases (RGDs) associated with birth defects, mental retardation and developmental disabilities, and would set the stage for clinical and translational research.
The mission of the proposed Center for Genetics Research Ethics and Law (CGREL) is to foster sustained interdisciplinary research on the ethical, legal, and social issues involved in the design and conduct of human genetics research with individuals, families, communities, and populations. CWRU already hosts a variety of research efforts relevant to the CGREL's theme. The CGREL will integrate these efforts to launch new research collaborations and provide the resource structure necessary for their application to high priority genetics research policy questions.