The IMPPC Biobank Recommended Reading of the Month
A Global Alliance to enable responsible sharing of genomic and clinical data
Paper: Global Alliance White Paper, June 5, 2013
Author: The Public population projects on genomics and society (P3G)
This paper describes the commitment of a group of non-profit research and non-research institutions to take a multidisciplinary approach to speeding up the advance of genomic research in the field of human health. For most common medical conditions, human genetic information offers an opportunity to improve the success rate of finding new drugs by directly linking drug targets to clinical outcomes in humans, and also by helping to stratify patients for treatment, based on the underlying genetics causes. However, a number of questions complicate this much sought after advance. Through the set up of an international joint initiative, this white paper tries to highlight the problems arising and the best ways to solve them.
Some of the authors’ comments
Bartha Knoppers, Chair of the Board of P3G, an international consortia of population biobanks, and Director of the Centre of Genomics and Policy at McGill University.
“The progress in biomedicine made possible by widespread sequencing of the human genome and integration with clinical information will raise important questions about ethics, patient consent, technology, and regulation,” “In forming this international partnership that brings together ethics, privacy, medicine, research, and technology under one tent, we aim to confront those questions from the most informed position.”
Fabien Calvo, Director of Research Programs at INCa, the French National Cancer Institute.
“In order to speed progress from research discoveries to improved patient care we must work
together – not only within our own counties, but across national and geographic boundaries.”
David Haussler, Director of the Center for Biomolecular Science & Engineering at the University of California at Santa Cruz and an investigator of the Howard Hughes Medical Institute
"Understanding the role of genome sequence in disease will require a technological infrastructure adequate to analyze millions of genomes with associated clinical information," "If we design it up front for interoperability, and to include the mechanisms needed to manage privacy and consent, we will accelerate progress immeasurably."