We were alerted by several users this morning that 23andme, the popular consumer genomics company, has frozen raw data downloads over “privacy concerns.”
I’m wanting to purchase the Raw DNA Upload service as I have used 23andMe in the past. They are not allowing me to export the raw data from their website. Is there a way you can receive this information from them directly with my consent?potential Gene food customer
To answer the user’s question, the only other way to access raw data from 23andme outside of the app is through the company’s API, and even this step ports the data to a third-party application rather than allowing the user to access the raw data itself.
Prior to 2018, 23andme had a generally available API that was free for development teams to use to build apps that are powered by genetics information. In 2018, 23andme froze access to its API, which cut many app makers out of the “circle of trust” for genetics applications. 23andme’s API was frozen right before the launch of Gene Food’s first version, and I remember those days well.
I have screenshotted a section of the API blog announcement from 2018 below in case the company decides to make edits in light of this decision.
As you can see from the blog post, access to 23andme raw data used to be a part of 23andme’s “core values.”
One of the core values at 23andMe is the belief that individuals should own their data and share it as they wish. Since our inception in 2007, we have always enabled customers to access their raw genetic data, download it and share it.23andme blog
Apparently times have changed. 23andme announced their new raw data policy on their Accessing raw data page. A screenshot is included below:
As an ecosystem has evolved around, and past, the 23andme API for the use of raw genetic data in third party applications, it seems 23andme feels it is missing out on revenue by losing customers to smaller competitors. (like Gene Food).
If users can no longer take their raw data from 23andme, this competing ecosystem will be starved, which will refocus a segment of the user base back onto the information they can glean from a 23andme report. This, to me, is the most logical reason why 23andme would freeze raw data downloads. The DNA test kit market has suffered due to privacy concerns (despite increasingly robust protections) and 23andme must have felt their bottom line was beginning to suffer from enthusiasm for third party apps.
The only way to access the 23andme API is essentially to have the company sign off on a company’s scientific process. This has the effect of turning every app into a rebranded 23andme, which users have been clear they do not want or they wouldn’t have been downloading raw data in droves for years now.
For example, our team at Gene Food has done our best to offer a sober take on the MTHFR gene, which sadly, has been the focus of some very hyperbolic claims by many in the functional health world. However, just because the role of MTHFR SNPs is overblown does not mean the variants are irrelevant and that testing for them is unnecessary, as 23andme suggests. We have written articles debunking the “MTHFR Symptoms Myth,” but have also discussed the outsized impact an MTHFR gene mutation can have on members of the Black Community, and our readers have thanked us for doing so.
Thankful for this post. We are researching my niece’s MTHFR gene. She is African American, has a complex history, is compound heterozygous; C667T and A1298C. Doctors remain baffled. If the scientific community can do more testing and studies for African Americans, we’d have more relevant answers to our issues.gene food reader
Were every application limited to 23andme’s perspective, it wouldn’t be possible to share information as we, and other apps, have.
Allowing the free flow of raw data ensures consumers can access concepts beyond what 23andme deems suitable.
Further, 23andme customers own their data and should be able to do with it what they please. Just a few years ago, 23andme agreed with this statement as part of their core values.
The move could hurt 23andme’s business
This move could backfire on 23andme. We routinely get emails from users asking which version of 23andme to buy, in part based on what the raw data files have to offer. So much so that we wrote a guide to the various 23andme chip versions.
For example, we just received this support ticket today:
Im thinking about purchasing the gene plan with you guys using my 23&me data. I was curious though, according to them I took my original test using their v4 chip. They are giving me the option to upgrade to their health & ancestry V5 chip for $79. What is better raw data for you guys to analyze, the V4 or V5 chip?potential gene food customer
My experience running a genetics company tells me that consumers of genetics products are using 23andme as a base and then further using the raw data to explore other applications.
Will the inability to freely use raw data discourage some potential 23andme customers from getting started with 23andme? It very well may.