Andrea Downing Be Your Own Advocate

SXSH, NHS Data Breach, and Myriad loses again….a busy week in the BRCAsphere!

Picture from SXSH

It has been quite a week in the genetic data geek-o-sphere!  There are three big stories happening right now, that are really interesting and relevant to the BRCA community.

SXSW / SXSH
There is a little conference happening right now called SXSW.  Ever heard of it?  Growing up in Austin, I have watched the conference evolve from a small music festival to the cultural media behemoth that it is today.  Since 2010, there has been a part of the conference that focuses on health data.  Lots of health activists, social entrepreneurs, and startups are now converging on Austin to talk about the latest innovations cancer research, patient engagement, and innovations.
Interested in understanding health data and how it impacts the BRCA community?  Conferences like this are a great way to get your voice heard, and to connect with scientists, developers, and startups.  Check out these links:
In other news…..
Big NHS Data Breach in the UK: 
 
Speaking of data privacy….this week a story broke about the NHS selling millions of patient hospital records, including names, address information, and really really private stuff to insurance companies and marketing firms in the UK.  Here are a few links:
 A story like this begs the question: how are we protecting the patients’ privacy in this emerging landscape of big health data?   
Image Think at SXSW 2014
Image Think at SXSW 2014
Craig Venter’s New Venture:

 

Back at the end of January, I wrote about Craig Venter and the early days of the human genome project.  Did you catch him in the news this week?  He just announced the launch of his new death-defying startup.  Check it out:

Let’s hope Venter figures out how to partner with patient communities and advocates and make sure he is truly getting informed consent to mine that genome data!  ( :   If he does this ethically, then I think he could accomplish a great deal of good.

My question is: do we really want to live longer?  I have always been more interested in finding smarter ways to screen for, treat, and prevent cancer ….especially for those of us whose families get cancer younger ages.

But perhaps if we achieve the former, we also gain the latter.  Thoughts?

 And finally…lots going on in the courtroom and on The Hill.