I can't articulate it very well (still), but I find it so strange that you and others of my favorite bloggers are advertising for this company. I get the intrigue with knowing something about your genes, but it also seems so iffy and potentially Brave New World and like something you might in other circumstances be really critical of. Can you write about why you're ok with working for them, or whether you have any qualms?
I'm very against this whole thing -- it's soooo not ready for prime time. You're super smart, Jo (and you too, Cecily), and very able to understand some of these risk estimates (which, actually, some very smart people can't), but genetic testing for most illnesses is still in its infancy/ experimental phase. The potential for harm seems quite large -- people altering their behavior on what very well could be completely erroneous information. Eating fewer carbs isn't going to hurt anyone, but, say, continuing to smoke because your reading says you're unlikely to get heart disease or cancer would be.
...
Information is power, but misinformation is danger, and right now at least some of these interpretations are definitely misinformation.
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As soon as personal genome analysis hit the market, I was fascinated -- I remember reading about it years ago, and thinking how cool it would be to get a gander at my mitochondrial DNA. That was my main reason for signing up as quickly and as enthusiastically as I did for the 23andMe service: the possibility of a look deep into the past, to the best of our ability to interpret the data. The other stuff, well, that came later.
A child of friends was in the hospital recently. His father, a scientist, marveled at the state of treatment at the most respected children's hospital in the country: "There's just so much we don't know." That's a phrase I hear again and again, with respect to the origins of PCOS, the development of Alzheimer's, so many different conditions about which we know a lot more than we did ten years ago but whose geneses remain largely in the dark. There's just so much we don't know.
For me, that's been the appropriate way to approach the question of personal genome analysis. It's a practice still in its infancy, as DoctorMama rightly points out. And in a world where the majority of people don't know how to interpret weather probabilities, the little nibble of information you get about, say, your chances of developing Type II diabetes can be baffling. 23andMe has made geneticists available for us to talk to about these things, which I think would be an absolute necessity for anybody who hasn't had a few statistics classes, but I also think this is the kind of information people need to take to their physicians. Having a slightly lower risk of developing diabetes doesn't mean you won't ever get it -- and having an increased risk doesn't mean that you will. And absolutely no gene will protect you fully from the effects dangerous things like smoking. Or, you know, inhaling asbestos or driving 110 mph without a seatbelt. Just because I'm resistant to norovirus doesn't mean I eat my cereal out of a preschool toilet.
Here's another example. My genes say that I carry a decreased risk of developing OCD -- but I did exactly that after Sophia was born. One genetic marker suggests a decreased risk for asthma, and another suggests an increased risk. Does that mean I break even and have an average risk? Does it even matter? Either way, I have asthma. I carry two markers that suggest I will have babies of typical birth weight (neither lighter nor heavier than average), and I had one 8 pound 3 ounce baby, and one 9 pound 10 ounce baby. Did I have gestational diabetes the second time? I do carry a marker for increased chances of developing GD. But I didn't get tested, so we'll never know.
Clearly, genes are not our destiny entire. We are complex beings composed of an interaction between our genome and our environment, with a little mystery thrown in if you like that sort of thing. Does this mean genetic analysis is useless? Of course not. It means it's a tiny little piece of the picture, a piece that will be more and more useful as we (general we) gather more and more evidence. I want to participate in the research because I think it's useful, I trust my own ability to interpret the evidence (with expert help as needed), and I find it fascinating as heck.
But that's just me.
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.
Posted by: Shandra | 04/27/2009 at 11:35 AM
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.
Posted by: TB | 04/27/2009 at 12:29 PM
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.
Posted by: Jo | 04/27/2009 at 03:25 PM
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.
Posted by: Jo | 04/27/2009 at 03:29 PM
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.
Posted by: TB | 04/27/2009 at 03:38 PM
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.
Posted by: Tine | 04/27/2009 at 03:59 PM
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.
Posted by: Jo | 04/27/2009 at 04:50 PM
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.
Posted by: Lisa | 04/27/2009 at 07:59 PM
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.
Posted by: Allison | 04/27/2009 at 08:28 PM
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.
Posted by: Shandra | 04/28/2009 at 09:27 AM
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.
Posted by: caro | 04/28/2009 at 11:23 PM