Tracking Ethical Provenance for Sharing Genomic and Health Related Data

Broad Institute, Inc., Cambridge MA

Investigators

Linked publications & trials

Abstract

Public Health Significance. The Global Alliance for Genomics and Health: Setting the Standards for Genomics and Health-Related Data Sharing aids genomic research and human health by developing standards and policies for effective and responsible data sharing between institutions and countries around the world. In line with the policy development and technical tool-building spirit of the GA4GH, this administrative supplement will advance the novel concept of ethical provenance in human genomics. It will create a new Ethical Provenance Subgroup of the GA4GH dedicated to helping biomedical researchers consistently record, update, and activate the conditions of ethical data reuse of genomic and related health data in ways that respect the values and interests of individual data contributors and communities.