PUBLIC HEALTH RELEVANCE: Researchers engaged in conducting genetic and genomic science are significant players in advancing biomedical science and health care. Through their work, they are a vital part of the ethical, legal, and social outcomes of science, but there is a gp in knowledge concerning how genomic scientists navigate the complex ethical, legal, and social issues related to their research.
PROJECT NARRATIVE This project will identify ways to demonstrate respect to prospective research participants that incorporate the perspectives of diverse patient populations who have been historically underrepresented in research. Demonstrating respect in a way that is meaningful to patients from diverse backgrounds has the potential to contribute positively to trusting, collaborative investigator-participant partnerships and to increase recruitment and retention in both the short term and the long term.
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 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. This K99/R00 Pathway to Independence Award will prepare the candidate to become an independent, mixed-methods ELSI researcher pursing a research program on ethical issues related to the actionability of genomic information. The study examines the values and assumptions underlying conceptualizations of the actionability of genomic information for healthy populations. Results of the study will contribute to the ethical and effective implementation of genomic sequencing into care for healthy populations.
Rose and colleagues developed a 10-item scale to measure distrust of the United States healthcare system (defined as hospitals, health insurance companies, and medical research) for use in the investigation of its prevalence, causes, and effects.
"Personalized genomic medicine" (PGM) is being promoted as a "new paradigm for health care" and a major goal for translational genomic research (TGR). In addition to overcoming TGR's remaining scientific hurdles, achieving that goal will involve addressing a number of ethical, legal, and social challenges. Some of those challenges reflect the ways that different social policies and health care economies will complicate TGR's ability to realize PGM as a viable health care paradigm.