PROJECT NARRATIVE Cloud computing promises to scale up storage, analysis and sharing of health data needed to accelerate research in genomics and precision medicine but methods for evaluating how responsible access to and sharing of genomic data is governed in the cloud remain severely underdeveloped. The proposed K01 aims to develop, validate, and implement a reliable tool in partnership with global stakeholders to assess genomic data stewardship across publicly funded repositories worldwide.
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.
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.
