The following is an edited excerpt.
Earlier this June, researchers and advocates from 40 countries formed a global alliance to enable the secure sharing of genomic and clinical data, aiming to end the era in which only the people who collected your genetic data had access to it.
With the new global alliance, it seems likely that genetic data collected by your doctor will one day be made widely available in the cloud, for researchers around the world to analyze.
This has tremendous potential for science and medicine. Putting genetic data online, however, also comes with serious, and not entirely known, risks.
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Read the full story here: Building the Internet of Genes
Additional Resources:
- “Accord Aims to Create Global Trove of Genetic Data,” New York Times
Read how the global alliance and its goals were covered in the news when the alliance was first proposed. - 1000 Genomes
Not everybody has qualms about releasing their anonymously sharing whole genome data. The 1000 Genomes project aims to produce “an extensive public catalog of human genetic variation, including SNPs and structural variants, and their haplotype contexts.” See more about the project, including their data, at this website. - “On genetic privacy,” Discover
Discover blogger Razib Khan offered his thoughts on uploading and sharing genomic data (he’s willing to do it) in a blog post back in March, 2013.
