As previously reported on Scope, Stanford and more than 60 leading health-care, research and disease-advocacy organizations have joined forces to create an international alliance dedicated to enabling the secure sharing of genomic and clinical data.
In an opinion piece recently published in the Los Angeles Times, Rajaie Batniji, MD, DPhil, a resident physician in internal medicine, examines the challenges and opportunities of building the "Internet of Genes." He writes:
There are also untold changes that could come to personalized medicine and public health. With your DNA in the Internet cloud, you could open an app to give your doctor permission to run a program on your DNA sequence, which could then help her decide which blood pressure medication is best for you. With gene sequencing, it will become far easier to trace a disease outbreak to its source (as was recently demonstrated in a tuberculosis outbreak), enabling public health officials to stop outbreaks earlier.
Achieving these advances in science, medicine and public health demand that we create the "Internet of Genes." Genomics has been remarkably absent from the information revolution. This is a surprise, because unlike a photo, which you can appreciate individually, extracting maximum value from your genome requires relating it to other peoples' genomes.
As the new global alliance has noted, the greatest challenge to our advancement of genomics and personalized medicine is our inability to bring together data from all over the world. With the exception of about 1,100 people who volunteered to make their whole gene sequences publicly available, complete genetic information is not accessible for wide use on the Internet. Instead, researchers, clinical laboratories, and pharmaceutical companies are sitting on petabytes of underutilized yet invaluable genetic data. Genetic studies remain small in size, despite the plummeting costs of sequencing. Data — paid for by taxpayers and insurance companies — sit mutely in laboratories around the world, used for a single study or clinical case and then discarded or archived.
The recently announced global alliance will begin to lay the foundation for breaking down these silos that render valuable data inert.
Previously: International alliance launches effort to enable secure sharing of genomic and clinical data, Stanford researchers use data mining to show safety of peripheral artery disease treatment, Atul Butte discusses why big data is a big deal in biomedicine and Transforming personalized medicine into the new standard of care
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