I just watched this video from the late Steve Jobs, and it made me think about informed consent for sharing BRCA data.
He says: “I’m an optimist. I believe people are smart, and some people want to share more data then other people do. Ask ’em. Ask them every time. Let them know what you’re going to do with their data.” As I look at ways to share my data with people who could research BRCA to help us find better options, I would like to keep coming back to this. It really resonates….because it holds those who access our data accountable, and it gives people who donate their data a choice about their futures.