Three reasons to become a citizen scientist RIGHT NOW.

Ever heard the term ‘citizen scientist’? First…here’s a working definition of what the heck it means.

Citizen Science:  projects in which volunteers partner with scientists to answer real-world questions.

Let me tell you why to start thinking of yourself as a citizen scientist.  For the first time, Previvors are using the internet to communicate with each other in ways that are helping us to find a shared identity.  As we do this, we are becoming a community that could help to drive innovation in BRCA research.  And as it turns out, getting participation from patients is actually a HUGE problem that we can help solve in science.  So with that, here are three reasons to become a citizen scientist right this very second…..

 

Reason #1: Citizen Science can help the BRCA community.   I don’t for one minute regret my decision remove my breasts on my own terms to lower my risk of breast cancer.  But to put it bluntly: I believe citizen science can help the BRCA community find other options than cutting off lady parts.  I think we need to start educating ourselves a little more about how research really works so we can push for better options. For a few years now, I have immersed myself in the BRCA community to try to understand what the path will be to better ways to treat and prevent cancer.  You know what I’m learning?  We need to start thinking as if no one is coming to save us…so we need to help ourselves.  We need to start thinking as if our community hold the power to change the course of their own futures.  I used to think there were teams of researchers out there working around the clock so that in a few years time there would be some incredible elixir for me to take to “fix” my broken BRCA genes.  With all the billions and billions of dollars going towards breast cancer “awareness” and research, you would think we would have gotten somewhere by now. But in reality, it’s more like this moment in The Big Lebowski…

Reason #2:  Citizen science can help YOU.  Do you feel sick and tired of getting mammograms and MRI’s every six months?  I certainly did before I had my PBM.  But I empathize for those of us who still go through surveillance.  Mammograms SUCK.  MRI’s SUCK.  Imagine if they were less painful. more affordable, and more accurate.  It seems logical that mammography would only improve as a technology over time, but somehow the technology manages to get more expensive and clunkier without getting more accurate.  Here is a great talk that I found a couple of years ago that breaks this down and helped change my thinking:

 

Deborah Rhodes gave this talk 4 years ago and I’m still counting the minutes for when we have something better than mammography!  The harsh reality its that there is tons of great science out there, but it’s not getting to patients in a ways that can actually help.  We have to start being our own advocates for this type of stuff. I feel like we grow to expect our iPhones and laptops to get faster, better, and cheaper.  But when it comes to HBOC we don’t think in the same terms or expect the same things.  But if we did, we might just get what we want and need.

Reason #3:  Citizen science could help us create meaning from our misery.   I don’t know about you, but I have often needed a way to channel all my negative feelings about BRCA into something good.  It’s a way for me to cope and to grieve for the things that I have lost because of BRCA.  That’s why I created this blog, and it’s why I spend so much time co-moderating Young Previvors, BRCA Sisterhood, and BRCA Commons.  Because something in me feels better when I am contributing to our shared identity as BRCA mutant sisters. I am starting to think of the amazing possibilities of how citizen science could be a way for us to create meaning from the suffering our families have faced as a result of our broken genes.  Here is a teenager who took it upon herself to make a new genetic discovery after she was diagnosed with liver cancer.

 

Gene sequencing technology is becoming fast and cheap.  There is a tsunami of new diagnostic tests and technologies, but none of them are translating in to real benefits for us …yet.  I really believe that if we start working more directly with researchers to do our own citizen science projects – we can start to see the benefits of these technologies in our everyday lives.  And the benefit?  We get to create a world where our children don’t have to struggle and go through the same painful decisions that we face.  Don’t we have a responsibility to make that happen?

 

Citizen science is NOT a cure-all for what ails the HBOC community, but I sure do believe that we need to start trying new things.  We need to challenge the system as a community a little more than we do – and find out what the roadblocks are to improving options so that we aren’t faced with the agonizing decisions we have to make. Are you with me?!  YES!  We created a new group and you are welcome to join us.  We now have 300+ members and we’re growing fast!  Think of us as a citizen science club for BRCA mutants!

Neil Degrasse Tyson

4 Comments

  1. Great posting, Andrea! I couldn’t agree more.

    I think the key thing we’re missing is a connection with data scientists who are (or want to) work on BRCA issues. I’ve never once been contacted by a researcher – despite my numerous participation in studies and trials. Every doctor’s visit I remind them to contact me for studies, but they are even unaware of studies going on in the very same hospital. I’d hope we have a pool of interested volunteers waiting to be tapped. We need a connection!

    I also think that significant cost barriers could be lowered if we each had the results of our own tests. I’m certain that in the course of my previous study participations, my DNA has been at least partially sequenced. If I had that to offer other researchers as well, wouldn’t my value as a test subject be enhanced? Perhaps I need to proactively sequence myself and provide the data? Or if we had a standard panel of SNP’s that researchers wanted to use?

    I feel like I _am_ the experiment, the data is me. I just need to connect with someone to collect the data – before it dies with me.

  2. EXACTLY!

    I so badly want to create that missing connection in a way that is very specific to BRCA. I know we are smart enough to make this happen. We have the community. Heck – we have 330 people now in BRCA Commons and we are growing fast.

    I think the BRCA community is a little different when you think about all this health tech and quantified / self-tracking technology our there. For us, the data really has to be a collective effort so that we can understand our variants.

    We need to start thinking about ways to harness our own data and combine the geno+pheno in a way that makes researchers come to us…rather than all these siloed and fractured efforts out there.

    How do we get this percolating?

  3. Lori Adelson MD April 19, 2014 at 1:26 pm

    Andrea great post and David too! We all need to keep pushing. The TED talk reminded me that we might find an answer or innovation where we least expect one. It also reminded me how the profit motive can inhibit good research and how crucial it is that unbiased funding needs to increase. Bravo to both of you for your good work.

  4. Great post. Here’s another TED on citizen science itself! http://m.youtube.com/watch?v=U7XOcB6_TWw

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