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04/27/2009

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Hey - I've been reading for a long time but I'm not sure I've commented before. But this topic's a hot button for me.

I mostly am fascinated by the way 23andme/23andwe is using blogs to link themselves to claims that they could never, ever make in advertising if those claims were coming from them.

For example, you basically said (implied) above that there is a proven genetic test for OCD, which would be a reason to sign up for a service like 23andme.

Since to the best of my knowledge there is no definitive genetic test -- there are six markers, and there was a rodent study that was pretty exciting, for sure, but not a test -- I'm guessing 23andme cannot link their service to this claim.

But you did it for them. So someone like me, with a family history of OCD, who's never really considered getting tested for it (mostly because there isn't exactly one that would be considered final) is suddenly tempted to go find out if I have this particular marker that probably-will-maybe-might continue to pan out as the research suggests.

By using you and other bloggers to promote them, 23andme just bypassed all the health marketing regulations, like that the test should be proven in order to market that it would be useful to me.

Does that matter when I go to give in my $399? I don't know. Maybe not.

But I'm not hugely comfortable with the way this company is going about its self-promotion, and it does make me question how it is really going to use the information it is collecting.

I haven't (yet) read into the whole privacy agreement either but it also occurs to me that a massive database of people with particular genetic tests would be an amazing marketing database for health-related companies. I mean they could sell me therapies for a condition I haven't even yet developed. "Send me more info!" indeed.

Anyways, I guess that's where my concern mostly centred. 23andme is speeding past the currently societally sanctioned ways of going about a "health sell" because they are pitching it as an "information sell." Linked to health, but not necessarily by them! By you bloggers.

Just my thoughts. Thanks for starting the discussion.

What Shandra said, and also - I really respect all of the bloggers that I read who are doing 23andme, and I do understand its appeal to them. But 23andme seems to have done a great job convincing ordinarily skeptical women that 23andme has more scientific certainty about what certain genetic markers mean, and the associated risks of certain conditions, than it is possible for them to have.

I think it's one of those things that is pretty obvious if you're outside of the situation but looks differently from inside. These people (23andme) clearly speak to Jo and other bloggers in language that they can relate to, that respects their intelligence, and they probably have found convincing ways to assuage any of the bloggers' doubts...

But that doesn't mean there is no reason to doubt, no reason to subject their claims to criticism (a difficult task indeed if you have traded blog 'reviews' of their services in exchange for getting these services for free). It is slightly creepy how enthusiastic ("but really dudes! this is SO GREAT! yeah I know this issue that issue BUT REALLY IT'S NOT LIKE THAT"!) the 23andme bloggers are, when they absolutely would not wax so uncritically about...well, any other issue I can think of.

Doesn't mean 23andme is nefarious or anything else, but...well, I'll just round up with 'what Shandra said', again, and my apologies to Jo if it comes off as critical of *her*, because I really like this blog and wouldn't want to offend. But this has been a little bit on my mind so I guess I might as well share my thoughts.

First, it's okay to be critical, and second, it's okay to be critical of *me*! Really! :)

Anyway. On to some salient points.

One: I forget that you guys can't see the same reports I see. First, reports are divided into "Clnical Reports" and "Research Reports". The first category contains things determined to be sufficiently demonstrated by research to be of clinical use -- in other words, the good stuff. Citations out the wazoo. The second category is, and I quote: "results from studies that still need to be confirmed by the scientific community. It also includes topics where there may be contradictory evidence. The results of these studies are not conclusive."

Instead of a little thingy saying "OCD GENE YES/NO" what we get is a multi-paragraph writeup describing the studies done, as well as a note about the strength of the findings. In the case of OCD, here's what it says: "Stress and pregnancy are known environmental risk factors, but the clustering of OCD in families suggests a genetic component. Exactly how much genes might contribute to OCD is unknown." And then there's the study description, and the finding:

(my genotype): "Substantially lower odds of OCD for men."

Hee hee. So truly, the finding is not even applicable to me!

I include all this not by means of advertising, but so you guys have a better idea of what's in the reports. They're pretty up front about the state of the scientific knowledge on any given condition. But of course I can't link to that stuff in my blog posts (it's password protected), so you don't get to see it.

Incidentally, the Type II Diabetes stuff is a Clinical Report. Entirely different ballgame from, say, OCD or lupus.

Although that's an interesting effect, no? Since you the public doesn't see what the participants see, it does seem to make 23andMe sound more definitive re: various genes than it really is. Which is maybe not what they want -- because the actual reports are pretty frank about their relative utility.

Well, you know, if I were in your position I'd probably have taken 23andme up on their offer. I really just can't be too critical of you personally. But I do find the way they are marketing this to be problematic.

Honestly, Jo, I totally trust your judgment. I'm pretty sure you wouldn't knowingly feed us crap. You seem quite capable of interpreting complex data, and you also seem to have a finely tuned personal ethical control center. I suspect you'd self-destruct within seconds if you did something slimy. :)

But.

I must admit I'm creeped out by the similarities I see in the 23andMe posts I read from different bloggers. I can see it in the post titles, in the structure of each essay, etc. I can see the template you're working from. And that bugs me.

I can't quite put my finger on why, but there you have it.

You know, I honestly haven't been reading the other bloggers' posts (well, Cecily's, yes). I will share that they gave us suggested titles/topics for the first two posts, and then after that a huge long list of like thirty possible topics with the freedom to come up with our own. So for the first two, yeah, that would've been there. But for the others, I don't know -- I haven't been working from a template, if you will -- I may just be sadly unoriginal.

Hmm I don't know why people are getting up in arms about this. I think it's interesting, and heck yeah I would do it if I had a blog and someone offered. It is a product for sale, that's true, but so is every aspect of the health field these days, from drugs, to medical equipment, to even homeopathic remedies. Drug companies market directly to the consumer every day for products with warnings like "may cause death." I really don't see the danger in giving information to people, if taken with a grain of salt. Knowledge is power.

Until this post, I wasn't sure the posts about this program were "ads" or whatever. Seems interesting enough, but there is no way I'd ever pay (or be able to pay) that much for such a thing. Definitely interesting though.

Just to say a little more - to me anyway there is a difference between advertising "our product does this" (when it does) and telling a story about pre-ecclampsia or OCD or whatever else, and then linking to 23andme as if it addresses that when, after you get the test, you get information about how it sort of does not, or you get information that isn't really proven to be effective or linked, and so on.

Sure, you eventually get the disclaimer. 23andme is really careful that way. But the bloggers have made the link for the consumer at a stage where the company probably can't.

It would be kind of like a drug company saying "take our drug, it MIGHT do this for you," which is not really allowed (it has to be backed up; off-label uses can't be advertised, or at least that is my understanding).

I work in magazine publishing so I am pretty sensitive to how careful most responsible media are when they present stories or make factual claims in a story. We would not run a story the way that I have seen the bloggers presenting their interest in 23andme. Even, or perhaps especially, if they were advertising with us.

That's part of the reason editorial and advertising traditionally are separate branches. And it's why companies are thrilled to approach bloggers.

And yes, people should be aware when they read blogs that this is how it works.

I still find it interesting and a little concerning how 23andme has gone out and recruited mommy bloggers who will reach a very emotional, targeted audience (pregnant mums and new people) and do the sell/call to action, at arm's length from the company.

A company that might (or might not, as consumer genetics are so new) fall under regulation that would prohibit them from saying their service can do things it can't.

On the other hand I think it is a really interesting start-up and I kind of hope it succeeds, so.

And Jo, thanks again for having the discussion because I do appreciate it and enjoy your blog quite a lot.

Thanks for addressing this. I'm too sick and tired to say anything smart, and everyone's already moved on to hot weather and zucchini patches anyway, but I appreciate the meta-discussion, and also knowing a bit more of the behind the scenes info that isn't so apparent to us on the outside.

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