Change The Game.
Just a quick note about the 23andme announcement that it has been granted its first gene patent. Read Dan Vorhaus, who provided us with pro bono advice, with the definitive piece on the topic so far.
23andme is a business. Their business is selling the anonymized data to those who wish to use it for research purposes and in doing their own research on the data. They tell you this up front, as they note in the comments on the blog post:
“We make reference to our intent to pursue intellectual property rights for discoveries made from our research in both Terms of Service (in section 13) and in our Consent document (sections 3 and 5).”
Companies exist not just to provide you with neat services, but to make money. And patenting genes is part of how companies in the drug and health space make money.
One of the reasons we have built Portable Legal Consent, and Sage Bionetworks, and the Synapse compute environment, is to provide competition to these companies from the open side. Open systems matter because the core of the system is a shared set of norms, not a single company or set of companies.
Competition from the open is healthy. It’s why browsers have “Do Not Track” features. It’s what we don’t have in social media (if Facebook buys Opera, as is rumored, I doubt do not track will be part of the next release).
Don’t get mad at 23andme. As @shwu pointed out, haters gonna hate.
23andme does something very important. Something they don’t have to do. They let you download your genotype, pretty easily, from their “Browse Raw Data” feature.
You can get mad at 23andme - which is, in the parlance of our times, hating the player. Or you can hate the game. Not only that, you can change the game. Download your data, and upload it into a common research environment like the one we’re building here.
You’ll be able to do that, very soon, here at Consent to Research. Our clinical research study has been fully approved by the Western Institutional Review Board. We’re finalizing testing of our software (I’ve already uploaded lipids and my own 23andme profile). And we’ll be throwing the doors wide open soon.
Sign up for our mailing list and we’ll tell you when you can change the game. It won’t be long.
(picture from Know Your Meme and not ours, thus not CC0 licensed)
Translators Needed!
We are rapidly moving to explore making Portable Legal Consent international. We’re starting by translating the core documents into Dutch, French, and German - and we’re happy to pay for the translations. Please pass the word.
PLC Approved - Sign Up To Be Notified
We received formal notification today that the PLC clinical study protocol and consent were approved on 4/23, and we look forward to advertising for participant enrollment in May once we have completed a few requested modifications to study documents and partner websites.
If you want to be notified when PLC launches and begins enrolling patients, make sure to sign up for our mailing list. It’s an incredibly low volume list so don’t worry about us flooding your inbox.
Update, 4/27/2012, 12:56PM US Pacific time: Please note that there is no study underway yet! There are still some tweaks to be made before we can begin advertising for participation. Signing up for the mailing list above is the best way to find out when you can start going through the process and uploading your data.
Your data are not a product
Another Nature editorial talking about our work here, this time in Nature Genetics. Another strong endorsement of the idea that patients are entitled to copies of data about their own health, and of building infrastructure that can route that data to researchers.
The title of this post was the title of the editorial. Couldn’t have put it better myself.
Our data are far too often products. Certainly when I use Facebook, my data is a product. When I use a loyalty card to get half off diapers at the grocery store, my data is a product. But my health data can do more than lower my tab - my health data can drive a revolution in health care.
All it takes is enough of us. We don’t know how many, but we’ll be finding out as soon as the PLC-CGR study launches.
For those wishing the formal citation: Nature Genetics 44, 357 (2012) doi:10.1038/ng.2244Published online 28 March 2012
Nature News Editorial Profiles CtR
Nature News ran an editorial called “Incidental Benefits” this week.
There’s a lot of good stuff in there but the conclusion is the kicker.
In this free market, how sure can researchers be that they are truly doing no harm to their study participants when they take a cheek swab? People thinking of entering a study will assess the risks of how their volunteered genetic information might be used, and this might make them more reluctant to participate. Researchers could help to counter this by offering them medically relevant information back in exchange.
Yup. Now that’s going to require a change in the way that researchers and participants interact. Consent to Research is a part of that change, and I was glad to see my testimony to the US Presidential Commission on Bioethics (my part starts about 15 minutes in) quoted in the editorial as well.
