How is sharing data through Beacon different from traditional medical practice?

In current medical practice, doctors commonly share basic, de-identified information about patients’ conditions and genetic variations in the hopes of matching a second case that could be therapeutically transformative. This practice is a long-standing tradition in the medical community but it is neither standardized nor optimized. The Beacon Project turns that informal transaction into a more efficient and effective search that can be a key initial step for learning from valuable genomic information.

Since much of that information is currently collected and held in silos, researchers lack the broad-scale ability to know whether similar data exist that could provide important learning when combined with their own data.

The Beacon Project was created both to test the willingness of organizations to share at the most basic, yes/no level, and also to allow researchers to understand if a specific allele exists in other data sets. Now that a Beacon Network has been created, researchers have the ability to discover valuable information within organizations that have lit Beacons. This is often a needed first step to aggregate and learn from large scale genomic data.

@mbaudis 2018-10-18
Edit on Github...