The zoo that is stem cells on Reddit

Can you learn important things about stem cells on Reddit? Yes, you can, but it’s a wild experience at times.

Researchers may often think about stem cells through the lens of traditional routes of communication like academic journals, but laypeople turn elsewhere to learn about regenerative medicine. This includes digging into stem cells on Reddit.

What’s the stem cell arena like on Reddit now?

I decided to take a look recently over lunch as a break from grant work. There is some good stuff on there now but also really awful things and even traps for vulnerable people.

Stem cells on Reddit

In my past experiences on Reddit I found it mostly positive and had interesting interactions. Of course, there are trolls on there too just like on Twitter. I’ve gotten a good amount of outright hate on Reddit over stem cells too, generally from fans of unproven stem cell clinics and some of the clinic operators too. I haven’t used Reddit much in the last 5 years or so. In past years I did AMAs on there, which were good experiences.

One of the most concerning things now is just how much marketing of unproven stem cells goes on via Reddit.

For instance, it happens sometimes via the main subreddit on stem cells. This subreddit has some unique, useful discussions. My impression is that the moderators have generally done a solid job there, but wild stuff comes through anyway.

One of the most common types of interactions on this subreddit lends itself to unproven stem cell clinic marketing. A typical post is a question about a particular clinic or about using stem cells for a specific health condition. The answers often include glowing comments about specific unproven clinics. That doesn’t seem likely to be by chance.

Many unproven clinics promoted

I can’t help but wonder if some of the posters and responders in the comments are clinic folks. It’s basically sneaky advertising and not something that moderators can easily address.

A lot of posts have strings of positive comments that together mention almost every main unproven stem cell clinic that I know of in the world including DVC Stem Cell,  Bioxcellerator, Cellular Performance Institute, R3 Stem Cell, Regenexx, etc.

If I wasn’t a stem cell biologist, I’d find it tough to wade through all the noise about stem cells on Reddit. If you throw in having a serious medical condition that today’s medicine can’t help, then you can be very vulnerable to misinformation and promotion. It can be hard to tell what to trust.

For example, in a Reddit post asking about stem cells for TBI, while there is some promotion of specific clinics going on in the comments (and some people even call that out), there are also people genuinely interested who perhaps have had a TBI or have a loved one who did.

Yet here’s another post on stem cells and brain repair, where a reader had a very helpful comment on navigating PubMed and how to start thinking about journal articles.

Risks

There are also occasional reports on Reddit of negative outcomes after people go to stem cell clinics.

For example, it is notable that the current post pinned at the top of the stem cells subreddit is about the guy who died after going to CPI in Tijuana. Some of the commenters don’t like the post. While it’s true that we don’t know if the stem cells that this guy got were the reason he died, too often such outcomes in the stem cell clinic world are not reported or thoroughly investigated.

Admittedly, probably many redditors like the open, sometimes unfettered exchanges about stem cells there. They may lean skeptical too so they don’t need me telling them to be cautious.

Overall, stem cell posts and comments on Reddit are a complicated mixed bag. The concern here is that many vulnerable people are getting drawn into risky, expensive injections of some kind of cells. I’m sure that is happening.

Is this a worthwhile thing for scientists?

The experience of reading about stem cells on Reddit is not so different from the complexity of searching for stem cells on YouTube or Facebook. Clinics are getting new customers that way too.

One unanswered question I have is whether it is worth the time for stem cell researchers to answer questions and post on Reddit. Is that a drop in the bucket or could it make a meaningful difference? It’s possible that doing things like AMAs has more impact for a given amount of time spent.

As a side note, I recommend the subreddit lab rats, which is a more general place to talk about life in a research lab. It has a strong focus on molecular and cell biology, which is my main thing so I find it enjoyable. There are a lot of funny posts. Quite a few posts are just about troubleshooting in the lab or dealing with difficult (or worse) mentors.