This core developed by Jennifer B McCormick examines fundamental concepts in scholarship on the ethical, legal/policy, social implications of genetic and genomic science. These include how the field of genetics has evolved into the current era of translational genomics and personalized medicine, genetic discrimination and stigmatization, existing legal/regulatory frameworks, race and ethnicity, return of research results, return of incidental findings from genomic sequencing, individual’s right to know/right not to know, and data ownership and sharing.
Project Narrative We will continue the effort to promote the development of novel yet practical solutions for important privacy and security challenges in human genomic research, via organizing genomic privacy/security competitions and workshops, with emphasis on engaging/supporting researchers from nationally underrepresented groups to participate in our competitions and attend the workshops.
The QDS project team at Washington University School of Medicine in St. Louis has developed the QDS Toolkit to support researchers in planning for and sharing qualitative data in an ethical manner. The Toolkit includes a planning guide that provides guidance and key considerations for research project planning, data collection and management, and sharing qualitative data. Additionally, there is information on the new Qualitative De-identification Support (QuaDS) Software, which improves the quality and length of time needed to de-identify data.
This NIH website explains the possible financial costs of data sharing and how to budget them in an application for funding.
Explore a list of data sharing repositories supported by the NIH.
This guide, prepared by the Council on Governmental Relations (COGR), provides information for institutions to facilitate their implementation of the 2023 NIH Data Management and Sharing Policy.
Use this checklist created by Open Science Framework to verify you have all the required elements for your Data Management and Sharing Plan.