This repository is under review for potential modification in compliance with Administration directives.
Dr. Malin drew upon examples from large-scale data-driven projects like the EMR and bio-repository at Vanderbilt University Medical Center, the eMERGE consortium of the NIH, and the All of Us Research Program, aiming to create a comprehensive database of EMRs, genome sequences, and mHealth records from one million Americans.
“Dignitary privacy is based on a belief that privacy is intrinsically valuable, whereas resource privacy is based on a belief that privacy is simply a tool that has instrumental value.”
Hughes, RL David.
Dr Mathews provided an overview of the recent NASEM consensus study report that focused on the use of race and ethnicity and other population descriptors in genomics research, including the recommendations made by the committee.
In a recent article in the Stanford Social Innovation Review, a group of authors “define a social license as the process of building trust and legitimacy from ongoing (i.e., constantly renewed) community or stakeholder engagement and acceptance of how data is being accessed and reused.”
American Indians experience elevated rates of health conditions like diabetes, chronic kidney disease, and cardiovascular disease, as well as greater exposure to environmental hazards.
The term data subject refers to an individual whose data are used in data science research using de-identified, public datasets.
Dr. Goldenberg discussed the evolving ethical, legal, and social concerns (ELSI) associated with biorepositories and biobanking.
Dr. Ustun discussed how machine learning models, personalized with sensitive features like sex, age group, and HIV status, can perform better for populations but worse for specific groups, potentially causing harm.
Letter of Intent by April 28 and May 28, 2023; Submission by May 30 and June 28, 2023 Dear colleagues, The NIH Common Fund issued two new notice of funding opportunity announcements from the Common Fund Data Ecosystem (CFDE): OTA-23-004 and RFA-RM-23-002. The purpose of…