I belong to a generation of women who know they have dangerous BRCA mutations, but our options to reduce cancer risk are agonizing.  I certainly hope for a different future for my children.

For a while I have been interested in this idea of citizen science.  Rather than scientists swooping down to save our community from cancer, what if we were the heroes in our own stories?  What if instead of companies making billions off our community by overcharging us for genetic tests and cancer treatments – we owned our own cures?  Could regular women who don’t have PhD’s have the wherewithal to advance the science of BRCA?  It’s an interesting thought, isn’t it?

I met Matt Might on a bus back in February.  I learned his story about his son and realized how much I had to learn from him.  We talked about a roadmap for finding one’s own therapy for dangerous and deadly mutations.  I wouldn’t presume to say that everyone is capable of what Matt Might did for his son – but it certainly makes me a lot more curious about what patient communities are capable of achieving through their collective data.

Matt was the keynote speaker for one of the latest Precision Medicine Initiative workshops.  If you don’t have time to watch the whole talk, you can also skip straight to the recap at 31:05.  But the whole thing is worth watching.

 

For many rare disease advocates the science is becoming the medicine when there are no other options.  I want to ask a question that is eating at me.  Is citizen science realistic as a way to move cancer research forward?

Recently the Risky Body wrote something that made me think:

“…It’s awfully convenient, given the ruthlessly expanding cancer continuum and the ever hungry cancer industry, that we’re told to take individual responsibility for a phenomenon so very far outside of our personal control.”

While this is in the context of a post about sexualizing cancer by DIY screening – are we doing the same when exploring the idea that DIY science can somehow bring about better options?

Something is really bothering me about this!

On the one hand, I want the freedom to challenge myself to understand the science of cancer.  I don’t want to be told I’m not smart enough to read scientific papers and understand the data about my own mutation.  I want patient communities to have a legitimate role as partners in research rather than just subjects of research.  I want to learn critical thinking skills to evaluate scientific claims, rather than to be told what to think.

There is something extremely frustrating about waiting for the ivory tower to come and save me from my own cancer risk when I know very well that science today does not translate into what I really want:  a smarter option to prevent cancer than removing body parts.  I want my data.  I want to understand my data.  I want to tell a story about how I was part of moving research forward.

On the other hand, I think the Risky Body brings up a good point about a potential danger in believing that we are each capable of curing our own cancer if we are just smart enough to learn about our own mutations.  Is it the same trap we fall into within the current breast cancer culture?  As Risky says, we teach people that if you eat right, exercise, and think happy thoughts, you won’t get cancer.  Does buying into this idea of citizen science add another layer onto all of that self-responsibility?

Maybe yes, maybe no.  I don’t know what the solution is.  I just want to be a part of the solution.