Creating an initial ethics framework for biomedical data modeling by mapping and exploring key decision points
Institution: HASTINGS CENTER, INC.
FOA Number: PA-19-053
Project Narrative This study would be the first to develop an initial bioethics framework to meet a critical gap in biomedical data modeling activities, where the downstream consequences of developing data models without careful and comprehensive review of ethical issues can be severe?not least because poorly developed data models have the potential to impact adversely the health of individuals, groups, and communities. Currently, there is limited conversation around potential bioethics issues in data modeling, and as yet no implementable guidance on how biomedical data science modeling research activities should occur. The initial ethics framework developed by this study would provide a roadmap to ensure that data modeling decision points are documented and their ethical ramifications considered at the outset of model creation, thus supporting core scientific values of inclusivity, accountability, reproducibility, and transparency that, in turn, foster trust in biomedical data modeling output and potential applications, whether local, national, or global.
NATIONAL HUMAN GENOME RESEARCH INSTITUTE
Sep 2, 2020
Aug 31, 2022