Prenatal screening and testing technologies using genetic methods are rapidly expanding, offering increasing amounts of genetic information about the fetus. However, research shows that women from underserved populations are less likely to receive or accept prenatal genetic services, leading to discordant birth outcomes. We propose to explore the barriers to access and acceptance of prenatal genetic care among women from underserved populations.
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.
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.
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.
This Pathway to Independence Award (K99/R00) will prepare the candidate to become an interdisciplinary ELSI researcher with a high-quality, independently funded research program exploring the influence of the genome sciences ? including epigenetics ? on conceptualizations and understandings of health, disease, and individual responsibility. This study examines conceptualizations of epigenetics related to children's psychiatric, behavioral, and neurodevelopmental health and their translation to community settings.
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.
PUBLIC HEALTH RELEVANCE: This project will explore the ethical, social, and cultural issues of the American Indians in regards to genetic research. Engaging tribal leaders and relevant stakeholders such as scientists, clinicians, and policy makers on issues around genetic research will create a more complete understanding of these challenges and enable them to create policies that may permit greater participation by American Indians and their tribes.
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.
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.
Project Summary/Abstract - The Risk Evaluation and Education for Alzheimer's Disease (REVEAL) Study is an ongoing series of multi-site randomized controlled trials that provide empirical data to address ethical, social and translational issues in genetic susceptibility testing for common diseases. Such work has become increasingly important given the expansion of genome-wide association studies identifying genetic risk factors for common diseases and corresponding efforts to commercialize genetic testing using these markers.