Free the Data

“Free the Data” is a grassroots movement to share genetic and medical information about BRCA+ mutations. I admit that I am reluctant to dive right into data sharing. I still feel a stigma from having a mutation. I have been surprised by how ashamed it makes me feel. Logically I know that I have nothing to be ashamed of, but it’s also hard to shake off these feelings when my body has been officially deemed aberrant by modern medicine. I oscillate between telling too many people about my BRCA+ status and hiding it. At this point, my BRCA+ diagnosis is still relatively new. I hope that eventually I will feel more comfortable talking about it publicly without a pseudonym. For now, I want to guard my privacy.

Thankfully, there’s a group of vocal BRCA+ women who are braver than I. Andrea over at Brave Bosom has been posting a lot about this, so go check out all the info she has gathered together.

Here’s a short video introducing the Free the Data movement:

And another much longer video of a symposium on BRCA+ data that was held at UVA Medical Center (the panel includes Joanna Rudnick). It’s well worth watching.

After doing some research on the Free the Data movement, I called Myriad Genetics to ask what they know about my specific mutation. The woman I spoke to was very nice and patient, but ultimately not helpful. I wanted to know how risk varies by mutation, but she claims that Myriad doesn’t keep track of variations in risk across mutation because the differences are negligible. I find that an unsatisfying answer. She also told me that the chances of a false positive are “extremely low” because Myriad runs the test twice and is reviewed two independent groups. I asked if there was any information that Myriad had on my mutation that she could share with me. She said no.

The one interesting thing that she told me is that 700 people have tested positive for my specific mutation. I know five of them are from my family, since we tested through Myriad back when they had a monopoly on testing. I wish I could say hello to the other 695 people. Thanks to founders effect, many of them are probably distant relatives. Galia has written about finding a cousin through online BRCA+ support groups. Having a BRCA mutation has very few upsides, but reconnecting with relatives would definitely be one of them.