This Pathway to Independence Award (K99/R00) will prepare the candidate to become an interdisciplinary ELSI researcher conducting high-impact, independently funded research exploring the impact of genetic and other biological explanations for addictions and other psychiatric disorders on attitudes and beliefs about health and identity. The research will examine how genetic attributions for addiction relate to beliefs about individual agency and treatment effectiveness among people with addictive disorders and clinicians who treat them.
PROJECT NARRATIVE Advances in genome editing, embryology, and stem cell science are making it possible to imagine, and create, new kinds of human-animal chimeras that are both more biologically and more ethically complex than previously created chimeras. This project aims to develop clear, reasoned, and practical recommendations and educational materials to assist researchers, research institutions and their oversight bodies, funders and the public in identifying, understanding, and managing the ethical issues associated with human-animal chimera research.
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 This application builds on the R01 study the Ethics of Inclusion: Diversity in Precision Medicine Research and aims to investigate the preferences of African American and Hispanic/Latino communities, including the uninsured, who are being recruited into precision medicine research for different types of genetic test results and their expectations and needs for information and resources to allow for informed, validated follow-up of research results and 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 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 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 Genomic technologies promise to transform our understandings of human biology and history, and offer unprecedented power to influence the health of individuals and generations. Such knowledge and power imply immense responsibility to use them in ways that promote social and ethical values. The proposed training program will nurture a diverse cadre of diverse interdisciplinary scholars prepared to critically and respectfully engage with the profound ethical, legal and social (ELSI) challenges raised by genomic technologies.
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.