Open Source DNA
Yesterday I was a bit confused when I read this tweet. Manu Sporny, founder and CEO of Digital Bazaar, announced in his blog that he has published his genome..
He send some saliva to 23andme, they analyzed his DNA and provided his genetic code to him (let’s neglect the discussion whether data from 23andme-chips represent a fully sequenced genome..). This process is very smart and not expensive, so this part of his announcement is not spectacular. Lot’s of people are doing so.
The interesting part of this article: He published the results (roughly 1 million SNP markers) from 23andme as open source project to github, licensed under CC0! So he has released all his rights on this data.
In general a very impressing step, he might be the first person who published its DNA under such a license. His intentions are more than exemplary, providing access to genetic data to everyone that wants to work with it, i.e. researchers.
So far, so good, but there are some disadvantages, he still dealt with some of it. For example, what if anybody uses this information against him? I.e. healthcare provider, they might deny him to avoid high costs because they detected some pre-existing conditions in his DNA. It may also affect employment and can lead to discrimination. His reaction:
I’ve thought long and hard about each of those questions and the many more that you ask yourself before publishing this sort of personal data. There are large privacy implications in doing this. However, speaking solely for myself, I think the benefits outweigh the drawbacks.
Very nice, but there are also some ugly implications he apparently didn’t thought about! All these disadvantages don’t only affect himself, they may also affect relatives (children, parents, siblings..). Did they all agree with this publication?
I can’t see the advantages to an anonymously publication. Attach some demographic information like age, gender, educational background and everyone is satisfied. Then you don’t have to bear any consequences with bugs in your DNA.
With all due respect for his engagement, I think this step is not really sophisticated.
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