Genomic data sets have become more accessible to researchers through a network of servers, dubbed beacons, called The Beacon Project, organized by the National Institutes of Health (NIH)-funded Global Alliance for Genomics and Health. Genomics researchers are interested in looking for a particular genetic variant in a multitude of genomic databases. Using these beacons, when a researcher finds a gene of interest, they then can apply for more complete access to the data. They can find mutations and find other researchers working on the same one.
However, the risk is that some of this data is not sufficiently de-identified, and in the process of ‘pinging’ these beacons for genetic data, someone can create an unauthorized genomic profile of that person. For instance, a ‘nefarious user’ can find the match for an individual’s genome in a heart disease beacon, then can infer that the individual — or a relative of that person — likely has heart disease. (more…)