Global Alliance Eyes Framework for Genetic, Clinical Data-Sharing
On Wednesday, officials from about 70 medical, research and advocacy groups, including NIH, announced they are joining forces to create massive databases of genetic and clinical data that would be accessible to doctors and researchers worldwide, the New York Times reports.
In January, 50 researchers from eight countries met to discuss the challenges associated with sharing genetic and clinical research data. The researchers agreed that there was a need for a global alliance that would standardize the data and make them widely available to advance medical knowledge.
Experts say there are no universal standards for sharing genetic data or policies for ensuring patients' consent to sharing their information.
David Altshuler -- deputy director and chief academic officer at Harvard and the Massachusetts Institute of Technology's Broad Institute -- said, "Each institution has its own approach."
So far, 70 groups have agreed to participate in the alliance, signing a non-binding letter of intent (Kolata, New York Times, 6/5). The groups span over 40 countries and include:
- Beth Israel Deaconess Medical Center;
- Dana-Farber Cancer Institute;
- Harvard University;
- Johns Hopkins University School of Medicine;
- MIT; and
- Stanford University (Broad Institute release, 6/4).
According to Brigham and Women's Hospital President Betsy Nabel, the groups will focus on giving patients the choice of whether to share their genetic information and protecting patient privacy for those who chose to share data (Johnson, Boston Globe, 6/5).This is part of the California Healthline Daily Edition, a summary of health policy coverage from major news organizations. Sign up for an email subscription.