UPDATED | August 30, 2018
According to an August 30 news release, Timicoin is urging consumers to sign its petition calling for genetic-testing organizations like 23andMe "to provide complete transparency in how they use collected genetic data and allow portability to whomever" the consumers choose.
ORIGINAL | August 28, 2018
Last Thursday, personal genomics and biotechnology company 23andMe notified outside app developers via email that it would disable their access to its application programming interface (API) in two weeks. This change means that apps will only have access to data reports produced by 23andMe rather than its raw genetic information.
The company made its API available to third parties in September 2012 to enable them "to build a broad range of new applications and tools for the 23andMe community generated from the company's data sets." Anne Wojcicki, CEO and co-founder of 23andMe, said then that the move would "open the door" for outside developers.
It appears that this door is closing, though, with customers' raw genetic information locked behind it and 23andMe safeguarding the key. Although app developers across the tech sphere will not have access to the data anymore, blockchain-based platforms will notably be affected. One example is the healthcare data blockchain network Timicoin, which recently expressed its disappointment with the change.
Timicoin (and its TimiHealth ecosystem) claims to have launched the TimiDNA platform to provide consumers with sovereignty over their genomic information, but with 23andMe's new restriction, raw genetic data from the biotechnology company can no longer be ported to TimiDNA. Apparently, Timicoin has received "thousands of requests" from consumers "to move data from 23andMe to TimiDNA."
Will Lowe, co-founder and managing director of the healthcare data network, commented on the situation:
"The tremendous uptake by consumers wanting to secure and control their data has been met with fierce resistance by 23andMe, which apparently has decided to do whatever it can to prevent consumers from sharing their own data with whomever they choose, specifically TimiDNA powered by TimiHealth."
Lowe went on to say that many Timicoin consumers were "deeply disappointed by the news." Further, Joyce Lignell, chairwoman of TimiHealth's advisory board, noted that 23andMe's change takes "away the consumer's ability to control and share the very data they contributed to" the company in the first place.
In a blog post published on Timicoin's website yesterday, Dr. James C. Bonnette, one of the team's medical advisors, condemned 23andMe and other genomics companies' purported practice of monetizing personal genetic data. Bonnette stated:
"To add insult to injury, you [the consumer] probably paid these companies to 'test' your DNA without realizing that they could care less about you and more about amassing a giant database that they could sell to the highest bidder. Since there are familial connections between the founders of 23andMe and Google, one could speculate that Google's vast database about you might have found its way into comingling with your DNA data."
The philosophy and ethics behind data ownership have led various blockchain startups, not just those in the healthcare field, to develop decentralized data solutions. Whether it be genetic information or an individual's demographic profile, these projects attempt to bring power and ownership back to the people.
It may sound dramatic, but Bonnette asks an important question in his blog post: Are we paying to sell our souls (in the form of data) to companies like 23andMe?