Open-Sourcing Patient-Driven Genomic Research with 23andMe's Research Revolution - Will it Work?

I've been laying in wait a long time-patiently-for my chance to be involved with the evolution of DTC genomics and public/personal health research in a way that makes sense.

Moving to San Francisco, devouring GenomeWeb daily - all of these have been precursors for the advocacy role I'm embracing from here on out.

Today I'm participating in the FIRST patient-driven genomic research campaign. Today the 23andMe Research Revolution begins.

(The lovely video of me spitting comes direct to your browser from YouTube. Warning: Footage contains moments of extreme viscosity. Don't say I didn't warn you).

If you haven't had the spit-kit, DTC genomics experience, 23andMe is giving you a unique chance to give up some saliva for a decent cause, and pretty much the only one I'm working for these days - patient-driven research and self-advocacy.

I'll be very blunt about why and how I'm cheerleading the Research Revolution cause. If first-person narrative form makes you feel squirmy and twitchy, put your perusal of my blog(s) and tweets on hiatus until this fall.

I'm going to be sharing a lot of details, blunt-force-trauma style, about why I'm choosing to do things like spit in a tube, champion consumer access to genomic data, and participate in screening and pre-evaluation process for the Personal Genome Project. If accepted, I'll open-source my genome. Here's why I'd be crazy enough to do something like that...

If you read my blog and/or tweetstream, you know I'm:

1. Fanatically devoted to establishing patient-centric, n=1, individual first-exponential second, modalities of research and care delivery.

2. Near obsessed with the DTC genomics market - after all, it's the only place where my health data is REALLY #myhealthdata. My spit, my kit, my results. I think 23andMe is providing a model for access and ownership of personal health information as MY asset that the rest of the system will be dragged into adopting, kicking and screaming.

3. Scared near-witless about intellectual property laws and genetics, aka the ability of corporations (like Myriad) and/or organizations (or even individuals) to patent genes. I can't stomach the possibility that in the future I won't have access to the most intimate coding of my personal composition - my genetic data - and will do everything I can to advocate against genomic slavery now. It's a radical stance, yes, and I hope we all look back on this post 8 years from now, term me the "girl who cried wolf" and laugh. I'm afraid we won't. I'm afraid someone else will someday hold the rights to modify/share my genetic info, and I'll be blocked from accessing or 'donating' it to public research efforts like this one at will. I can't sit idly by and wait for that to happen.

You'll see many more eloquent updates in the coming weeks as I go on the genetic testing journey of self-discovery, self aggrandizement, and self-doubt, but for now I'll keep it to the 'ask.'

And it's actually a selfish, not a selfless, one.

I need 23andMe to make this model work for one or more of the first 10 'test' conditions so we can get around to researching a disease that hits below me the belt both personally and professionally - bipolar disorder.

Here's the deal.

We need 1k - 2k participants PER CONDITION to prove that this 'open-source' patient-driven research thing really works.

We need those kinds of big eye-popping numbers to take to foundations, and grant-makers, and government orgs, and universities, and research institutions who are doing the latest and greatest in condition-specific research.

These kind of people need some proof of the hard number variety, not just a puffed up sense of importance that comes from nice comments on a Facebook page, or thousands of follower on Twitter (gulp) or photos of the spit kit experience (fun as it is to document - it felt like configuring a personal chromosomal time capsule).

Here's the kicker.

Disease research is expensive, no matter who you are, and how much money you've got. I don't have a lot, but I'm going to be giving Chia Hwu, 23andMe's Community Manager and one of the Research Revolution gurus wrangling this program, her first $99 Research Revolution check tomorrow.

I could have gotten my spit kit for free, but I decided this afternoon I'm committed to going through the process like every other advocate and community leader who signs on to champion this kind of research evolution.

Here's the thing: We need to prove the power of patients to self-organize so we can go after subsidies and grants for this type of research. That means us early adopters, as so often happens, will have to pay up front to get things started - $99 in this case. Trust me, I pushed on this.

I wish 23andMe could offer this first round of research for free. My personal goal is to help prove a model that one day provides complete subsidization of genomic research for those who are willing to 'donate' DNA. Donating genetic material for public health research will, one day, be as systematic as donating some platelets during a blood drive. Maybe we'll even get donuts afterwards.

I'm hopeful we'll see partnerships with companies sponsoring employee involvement, foundations giving matching grants to support condition-specific community growth, etc. in the near future, but we've got to make one hell of a strong case first. We need to show individuals are willing to step up and self-organize.

Can we do it? I honestly don't know. But I think if people-who-are-patients want to storm the ivory tower of research that is academically and/or economically driven, we've got to start here. We've got to try.

But to make that work, we've got to make this work first. I'll be working with 23andMe to help find champions for these initial 'test case' conditions. As fast as I can, because, as I said, I've got a family of bipolar patients (literally and figuratively) whom I'm committed to protecting, to defending, and to advocating for lives with better, more personalized treatment modalities.

If it helps cure, or even develop better treatments for bipolar disorder, I'll open-source my entire genome, as soon as I can swing the sequencing. I've known too many people who've lost years, given up hopes, and sacrificed possibilities on the bloody altar of this condition. I won't be one of them.

So about that ask...What do I want from you? It's pretty simple. I want you to join, one way or another.

Comment. Get involved. Blog about Research Revolution. Keep talking about #myhealthdata, and where you feel like you own it (or not).

Ping me on Twitter (@jensmccabe, @polarwisdom), or get in touch with Chia (@23andMe, @chiah).

Revolutions are just the type of movement I like to see getting started.

To help get this one off the ground, I'm putting my $ where my mouth is...

I'll personally pledge a matching gift to support 2+3 captains and advocates (5 total this first round) for the Research Revolution program.

Leave a comment here with your country of residence/citizenship (has to be in one of the 23andMe 'ship to' countries) and which of the ten 'ground zero' conditions you'd like to advocate for, and WHY.

You've got 2+3 days (5) to submit.

I'm tired of talking about getting involved, preaching about what we can do differently, and sitting around at HealthCamps b*&tching about why nothing is changing.

I'm offering up chromosomes to make a difference. What have you done for health reform lately?

Posted via web from Jen's Posterous

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