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.
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. 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.
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 Pathway to Independence Award (K99/R00) investigates and leverages perspectives from members of the health-related private sector genomics industry, to develop guidance for improving approaches to social and ethical issues in the industry. It does so through in-depth qualitative analysis (interviews, cases studies, comparative analysis), scholarly normative analysis (drawing on theories from bioethics and business ethics), and a Delphi process of iterative questionnaires with industry stakeholders, aimed at strategizing concrete change regarding social obligations of the industry.
The proposed administrative supplement is intended to close out the work undertaken during BRIDGES1 and generate research ideas for future grant proposals that will ensure the sustainability of the work of our CEER.
The Risk Evaluation and Education for Alzheimer's Disease (REVEAL) Study is an ongoing, multi-site research project that is designed to evaluate the psychological and behavioral impact of genetic risk assessment with disclosure of APOE, a susceptibility polymorphism for Alzheimer's disease. In the first funding cycle of the REVEAL Study, we developed a novel risk assessment methodology and conducted a randomized clinical trial in which 162 first degree relatives of patients with AD received genetic risk assessment with or without APOE disclosure.
The mission of the University of Toronto MHSc in Bioethics International Stream is to strengthen individual and institutional leadership capacity in bioethics, with particular emphasis on research ethics, in low- and middle-income countries. We work in partnership with existing and emerging programs in strong institutions in the developing world to identify leaders who will make those programs successful and sustainable.
The proposed CWRU training grant in international research ethics builds upon and expands a highly successful international research training program, funded by the Fogarty International Center for a total of six years, and longstanding relationships with our overseas collaborating institutions. The training program includes trainees from Nigeria, Russia, and Romania in a Master's degree program in Bioethics and, in addition, offers one in-country certificate program per year.