YOU GAVE CONSENT BUT DO I HAVE PERMISSION?

PROJECT NARRATIVE The proposed research is relevant to ethical, legal, and social implications of genomic information sharing as it focuses on evaluating information models which support stewardship of biospecimens and data – including genomic information. This work has the potential to account for a variety of expressions of biospecimen contributors’ preferences and values, as expressed in consent forms, and promotes transparent and ethical use of downstream applications such as those leveraging machine learning and artificial intelligence approaches. Thus, the proposed research is relevant to the goals of the National Human Genome Research Institute’s Ethical, Legal and Social Implications Research Program, including their focus on research for Genomic Research Design and Implementation, specifically in Data Science and Data Sharing.