It’s been a big week for the BRCA Community. On the heels of Myriad’s announcement to stop disputing their patents on BRCA, the White House announced the details of their new precision medicine initiative! Obama was introduced by Elana Simon, a survivor of a rare pediatric cancer who had isolated her own mutation by gathering tumor samples from other patients within her community. Here is her story:
For anyone who missed this morning’s announcement, here is President Obama announcing the launch of a new Precision Medicine Initiative.
For those of you know this blog, you know that I started on this path because am passionate about the intersection of BRCA, technology, and data sharing. I was SMARTER options to prevent cancer for men and women who are at risk of hereditary cancer.
It’s time to put personalized medicine front and center in hereditary cancer care, and other genetically triggered diseases. Here are a few great moments from this morning:
“if born w particular genetic makeup, that’s not our destiny, our fate. we can remake it. that’s who we are as americans.” @barackobama
— EmilyKramerGolinkoff (@emilykg1) January 30, 2015
I’m at the @whitehouse to hear the #POTUS talk about something that is going to save Drews life #CysticFibrosis pic.twitter.com/FNoOoi5UsF — Erin Moore (@ekeeleymoore) January 30, 2015
Patients in the Front Row – that’s the story of today’s #PrecisionMedicine announcement!
— Nick Dawson (@nickdawson) January 30, 2015
I am excited. Here are the questions that I have in the coming months:
- If we are sharing unprecedented amounts of data, how do we bridge the huge gap data literacy gap that exists in the BRCA community today?
- How do we help women understand how their individual data makes a real impact on cancer research?
- How do we protect our data rights, and make sure that data is shared in a way that patients can understand?
- How do we share data back with patients effectively so that it’s meaningful, understandable, and useful?