Selling stuff for your genes

Jun 10th, 2011 | By | Category: Politics & Law

Something that worries me about the personal genomics revolution is that the legitimate foundational science that forms the basis for understanding human biology and variation is going to be hijacked by marketers. Certainly that’s not a new phenomenon–all sorts of themes of technology have been used to sell cars, and skin care products, and rejuvenating tonics. Some stuff is marketed as ancient and revered technologies and knowledge through millennia. So I’m not suggesting that it’s novel or a feature of personal genomics, but it is fascinating to watch it become part of the cultural zeitgeist. [and yes, I am aware that the keywords in this post deliver Google ads for all the stuff I'm grousing about]

I mentioned it once before when I talked about the Jeep that is “genetically engineered”. That surprised me so much because many people I know recoil in fear from genetically engineered food (because they don’t understand it). It was curious to me that for some audiences that is a feature, not a bug, actually.

Some of the ads are going to be just laughable, and it will be fun to dissect them. Some are going to be flat out lies. And some are going to be harmful and misleading. For example, “biomedical” quackery cures for autism can be appallingly painful and potentially dangerous. And even some potentially legitimate applications of technology can be misused in the name of false hope at this point, and cost parents ridiculous sums of money–such as stem cell treatments for autism.

Two things reminded me of this today. One was from the Copenhagen Consumer Genetics Conference (#CGC2011 for the tweets).  This aspect is one that I expected this to be a consequence of the recent Pulitzer Prize-winning story about the kid who was diagnosed with genome sequencing, and successfully treated (I wrote about that here). One of the speakers at the conference said they are being deluged with requests for the same service for other kids with undiagnosed conditions. As Daniel MacArthur tweeted:

(1) Elizabeth Worthey is now presenting this amazing story of saving a child’s life with sequencing: http://t.co/gS6DVDq #cphx

(2) LW: since this story, swamped by families wanting genome seq for their child. Established a review system for selection. #cphx

The review process is totally the right strategy–but that’s definitely going to frustrate some parents who don’t make the cut. And I can totally understand that. What’s going to happen as a result is that others will fill that niche–and I’m sure we’ll be seeing the ads any minute now. Some will be legitimate sequence providers. Some will not. Some will offer good analysis and quality counseling. Some will not. I know that a lot of my amigos are entirely opposed to any regulations around personal genome sequencing. But I hope that regulations can be developed that balance access to the data with protection from quacks and thieves on this front.

From an entirely different perspective I was reading a guest post on Chris Mooney’s blog: Sexy Science? The New Glam of Science in Advertising It highlighted a “Youth Code” skin treatment from L’Oreal that claims to repair and regenerate your skin. Ironically, while looking for the tweets from that conference, I also saw this:

RT @RDGene Bruno Bernard L’Oreal predicts cosmetics will play a big role in this field. But no samples, darn #CGC2011 oops not BB, intro

I’ve spoken to cosmetic researchers at conferences–they have very smart and high-tech studies going on at some companies.  There may be some that actually will be able to do what they claim. But there are going to be an awful lot of claims, and not all of them are going to be supported by data.

It’s going to be a bumpy ride through consumer personal genomics. Your best bet is to learn what your genome data may and may not tell you, and strap on your critical thinking hat about advertising claims–as I hope you are doing now anyway. And don’t get lured to give your DNA to sexy models. Know who is handling it, and why. And think carefully about the items being offered–and think through some of the aspects now before you get emotionally involved because of a sick kid or your approaching sagging skin. Sequence responsibly.

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