Crowdsourcing genetic data

According to Rajaie Batniji’s recent article, earlier this month, researchers and advocates from 40 countries formed a global alliance to enable the secure sharing of genomic and clinical data.  The potential benefits of sharing this type of data are significant, however concerns are being raised that there also may be serious risks.

On the plus side, using an open innovation approach could help scientists unravel the genetic causes of disease and focus on early prevention.  It could also allow researchers around the globe to have equal access to important genetic data.
Personalized medicine and public health could improve as well.  With your DNA in the Internet cloud, Batniji says 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 medication is best for you. It can also become far easier to trace a disease outbreak to its source, enabling public health officials to stop outbreaks earlier.
Batniji notes that the sharing of genomic data does not come without risks.  Gentic information that can be tied to a particular individual could be used to deny employment or insurance coverage.  Perhaps most ominously, if mismanaged, DNA sequences could be used to create bio-weapons, frame crime suspects or discriminate against people in unforeseen ways.
The question we face is whether the new global alliance referenced above can strike the right balance.  If it can successfully guard against the risks, the opportunity exists for tremendous benefits.

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