Regeneron bought 23andMe…what does this really mean?
We've been talking a lot this week about why the sale of 23andMe to Regeneron matters - a lot.
[TL;DR Transparency, traceability, and participant-level control aren’t just ideals—it's what everyone's looking for, and it's already happening at Folia.]
This isn’t just a story about acquisition - it’s a signal, and a call to pay attention.
Patient-generated data - from individuals who’ve actively chosen to share it for research - is deeply valuable.
At Folia, we agree that utilizing this kind of data can transform research, accelerate drug development, and close real gaps in evidence. Multiple of our team members have consented for our own 23andMe data to be used for research in the past.
...How do we feel about it now being owned by Regeneron?
🤔 It may not ultimately be problematic in every case, but it makes us uneasy to realize that we didn’t have any control over this transfer of information. Where’s the opt-out button? How often is this happening in smaller, less publicized ways when we’re not aware of it at all?
🧪 How do we know what Regeneron plans to do with the data? Will we have any say in those future uses?
🕸️ What if Regeneron sells it to someone else? Will we have any visibility? Where does the web end????
Seems that it should be instead like this:
🤳 I have a consistent app or interface that I use to see where my different contributed health data is going
➕ I can add context or new info to make sure that data is accurate and reflects my health journey correctly
☑️ I can see the flows and reject certain transfers/uses if they don’t work for me
📊 I actually get some feedback on what is being learned from my data - what are the studies finding? Is that info useful to me or my care team?
The good news is that not only is this level of traceability and control possible - it’s currently happening! At Folia!
We make sure:
✅ Every user can always see and control how their data is used, with detail
🟢 The data is complete, with context on each individual participant's journey provided directly by them
🔎 We’re being proactive and upfront about who sees data, and why
💰 We are returning value back to our contributors through our Data Dividends program and ongoing participant insight reports
Everyone else can do this if they choose to, too.
Our call to the industry is to continue embracing patient-generated data, but do it with radical transparency, traceability, and participant-level control. This is where trust comes from! Make it easy to say yes, clear to say no, and aligned on what patients value.
Think about yourself as an individual - would you want to be part of this?
🚀 We're preparing to launch a Self-Determination for Health Data Pact for individuals and orgs who believe in these principles. If this is you, let us know.