Little Previvors, Big Data.

The dust is only beginning to settle on last week’s Supreme Court decision.  We celebrated together.   We did cartwheels.  The goal of Association of Molecular Pathology v. Myriad Genetics was to open up research in a way that is collaborative rather than competitive.  But the goal for me is much more personal:  my family needs smarter ways to prevent cancer.  

The Supreme Court unanimously agreed that human genes cannot be patented.  Now we’re left to ask….what’s comes next?  Even Bill Clinton is raising this question….er…well…in his trademark circuitous Clintonian fashion.

With this in mind I have a few observations.  I am starting to witness something of a land grab for our BRCA data, and I want our community to take notice.  Sitting in the shoes of someone who is directly impacted by last week’s outcome, my hope has always been that the medical community will give us a seat at the table as they research BRCA.  As oral arguments were heard at the Supreme Court Case I stood at the steps arm-in-arm with other women yelling “FREE OUR GENES!”  What does that mean for us?  How does freeing our genes lead to better health outcomes and smarter ways to prevent cancer?  First, I’ll tell you how it shouldn’t be done.   I’ll tell you some early campaigns that could use some help from Previvors.  (NEW NOTE:  I’m learning that all these groups have good intentions…we just have to work together!!)  Here are the first two that come to mind:

  • Sharing Clinical Reports:  This group started a campaign asking the doctors and clinics to share our clinical reports.  Here’s an article on it from the New York Times.  The call to action is for clinics to sell Myriad’s BRCAnalysis results to this project.  Patients have no say in the matter.  This project has no Institutional Review Board process as part of this data collection.  There is a call to action for patients to participate, but I reached out to them and received no follow-up.  Now, I know they mean well.  But this doesn’t seem to be the right approach.

I am hoping is that we can find ways to take ownership of our information while getting support from researchers, scientists, and advocacy groups.  What we really need are huge data sets.  So how do we get there?

Previvors are capable of having a seat at the table as our genetic data is divided and shared among researchers.  After all, it’s OUR data….we’re the natural resource in this equation.  With this in mind, I ask for leaders in our community to be transparent about how the data is shared.  I ask that we build something together, ensuring that efforts are coordinated and ethical.  And I ask that you give patients a choice to remove their own data if they decide it should be removed.

Alright….I’ll step off of my soap box.  I’ll give you some examples of groups I see who are doing interesting stuff that we should watch closely….

  • Society for Participatory Medicine – This organization is doing something new, by meeting the need for patients to have a stake in health outcomes.  They encourage active engagement where patients actually have a seat at the table.  They actually have a journal that allows patients to publish papers.  To me, this is a model and a group we need to take notice of as Previvors.  Because they understand the importance of giving patients a voice, and letting patients take the lead.
  • Medicine X – There is a movement “e-patients” whose battle cry really resonates.  They say:  Give me my damn data.  It seems that Previvors aren’t the only ones who see the value in taking ownership of our health, our data, and our futures.  Check out the story of e-Patient Dave, and his quest to beat a rare form of cancer.  And then there is Hugo Campos, who is blazing the trail to be empowered by ownership the data that is generated by his heart.  They are setting great examples and we can learn from them.

  • Sage Bionetworks – This is a bioinformatics nonprofit which is working to bring in patients as stakeholders, and building out a legal framework that requires consent from patients.  I would love it if an organization like this helped make these ‘free the data’ efforts a bit more coordinated, and allow patients to take the lead.

I know there are other projects in the works.  But none of those projects have made their intentions known and I’d love it if they would step forward.  If we are ushering in a new era of open research, let’s make sure we’re doing it right….with transparency.  Previvors can help.  We have a responsibility to help.  Researchers need patient communities to step up and take an active role in cancer research….because this is the path to finding smarter ways prevent cancer for women who carry BRCA mutations.  I realize that it’s not just about my data…it’s about our collective data and what we can learn about ourselves in the process.

A final thought.  Back in 1951, Henrietta Lacks was diagnosed with cancer and a sample of her cells were taken for research at Johns Hopkins.  Her tumor cells had a rare and special power:  they could be kept alive and continue to grow.  Without Henrietta’s permission, knowledge, or consent, the HeLa strain was created and she unwittingly became one of the single most important contributors to medical research in the past century.  Her cells have been bought and sold by the billions.  And while I’m sure Henrietta would have been more then willing to help others by having a choice to contribute her cells to research, I can’t help but draw a thread back to our Previvors.  Will the medical community continue in the same way that they have in the past as we usher in a new era of precision medicine and “Big Data”?  Or will patients have a seat at the table?

Let’s not repeat history.  Now give me my damn data.  

4 Comments

  1. e-Patient Dave June 20, 2013 at 1:57 am

    Holy crap, where the hell did YOU come from?? 🙂 AWESOME! Blast away!

    I’m in the middle of creating a speech for the morning so I can’t pursue this now but YES YES YES, and I’m so glad Mighty Casey tweeted this. We must meet.

  2. Why, hello Dave! Thanks for stopping by, and for the kind words! Yes, I’d love to meet, and I’m new to all of this so I have a lot to learn ( : Feel free to contact me andrea@bravebosom.com.

  3. You raise important questions here. It is ironic that it’s our data and yet we may not have any say as to what happens to it. It does remind one of Henrietta Lacks doesn’t it? Sad, but true.

    I think you should stay on your soapbox. We need you there to help get us that seat at the table. Thanks for writing about this.

  4. Thank you so much for this post. This is such an important topic! After hearing you speak about this, in person, at the BRCA Sisterhood potluck, it was very obvious that this is an issue that we must all take an interest in. So many of our BRCA sisters forget that we all have a voice in this. Andrea, lead the way, we’re all behind you!

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