Project Narrative This project will identify and reduce ethical and practical barriers to sharing qualitative research data. It will develop new resources to increase data sharing in an ethical manner, which will improve the quality of research data, facilitate new research in a cost-effective manner, and foster the training of new researchers.
PROJECT NARRATIVE In response to the continued underrepresentation of African Americans in aging research involving genetic material, this study seeks to test the feasibility of an innovative method to explore the interaction of multiple factors that influence the decision to participate in research that can be applied to representative samples of, typically underrepresented, participants. Through a gamified, card sort adaptation of a factorial survey design, we will examine a range of study ?attributes?
PROJECT NARRATIVE The central goal of the proposed research is to determine the cost-effectiveness of integrating whole genome sequencing into the care of healthy adults. We will assess the health impact and cumulative healthcare costs of participants of a randomized clinical trial of whole genome sequencing five years after they received results, and we will extend these analyses over patients' lifetimes using decision analytic models. Findings will inform development of clinical guidelines and reimbursement strategies to accelerate the integration of sequencing into medical care.
The overall goal of this project is to understand how to encourage and enable people who are developing artificial intelligence for personalized health care to be aware of values in their daily practice. We will examine actual practices and contexts in which design decisions are made for precision medicine applications, and use this information to design group-based workshop exercises to increase awareness of values.
While great strides are being made in identifying early signs that place people at a ?high risk state? for different illness conditions, at the same time, advances are being made in the identification of genes associated with ?high-risk states?. This study proposes to develop two innovative clinical tools that could greatly facilitate dissemination of a beneficial genetic malleability framing to high-risk youth in order to encourage increased treatment engagement and uptake of healthy behaviors. The impact of genetic information assumes special importance in the ?high-risk state?
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 The goal of this study is to study the effect of an evidence-based communication tool to support patients? decision-making about noninvasive prenatal genetic testing, by focusing on the communication that takes place in the clinical encounter.
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 The lack of American Indian and Alaska Native professionals in genomic sciences today highlights the tremendous need for effective training and research programs to prepare the next generation of indigenous students to be successful in their pursuit of careers in genetics research. This program combines didactic and experiential training activities, together with indigenous and community-based models of learning, to engage underrepresented Native students in research on the ethical, legal, and social implications of genomics research.
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.