Andrea Downing BRCA, Data Sharing

Welcome to the Wild West of BRCA Data Sharing…..

It’s been such an exciting couple of weeks!  Where do I begin?  After the landmark Supreme Court Ruling that determined our genes indeed cannot be patented, campaigns are popping up all over the place as various groups seek to free our community’s genetic data.

Here’s one campaign telling us to free our genes….

//platform.twitter.com/widgets.js— jason magallenes (@surfersmags) July 19, 2013//platform.twitter.com/widgets.js

And another campaign telling us that we should free the data….

And another yet another campaign calling for genome liberty….

These groups range from well-established nonprofits to bootstrapping biotech startups who see the changing landscape.  Part of me wants to cheer everyone on all at once.  Part of me wants to say “HOLD UP, DATA COWBOYS!!!  Can you bring Previvors to the table as you charge forth into this new wild west frontier of genetic data sharing???  We’re not just genes and data!!  We’re human!!  Ask us questions!  Let us help!”

I think this Dilbert cartoon puts it best….

dilbert

 

As all of this excitement unfolds, we are also seeing even more drama as the internet reacts to Myriad’s new round of patent lawsuits to shut down new diagnostic tests….

 

I’m learning quickly that there are no easy answers…..  These big changes inevitably come with a lot of uncertainty.  My current thought on the whole thing is that all of this change and uncertainty is very GOOD thing.

But let’s not screw it up, people!  Let’s work together.

With this in mind, I’m  seeing some very helpful people emerge in this new landscape….people who are really taking the time to sit down and answer questions openly with the goal of empowering previvors with resources that can help us make informed decisions about the future of our community.  It’s really exciting and humbling to see all of this unfold.

So what’s the call to action here???  What can you do?

First, help me ask tough questions….

  • How do we get all these BRCA data sharing initiatives to work together?  How can we build a culture of collaboration rather than competition?
  • Who is taking time to really empower our community and to teach us the value of our BRCA data? (….because let’s face it this isn’t easy stuff to get our heads around!).
  • What do scientists really need from BRCA mutation carriers in order to create better tests— and ahem — better methods of treatment and prevention rather than than the invasive surgeries and screenings that we live through today??
  • Are these campaigns self-serving, or do they seek to truly benefit women who live with BRCA mutations?

Second, help me speak up.  I’ll be hosting conversations and G+ Hangouts all over the internet with some of the people who are leading these BRCA data campaigns to give you a chance to get your questions answered.  It’s up to you to if you want to have a seat at the table…..I’d love to have you join us and will be posting updates here.