Free My Data

22Jun14

Since it’s been nearly four years since I last read up on the major findings BRCA1/2 research, I have been expecting to find some exciting new news.  So here’s one new tidbit I have found: the Free My Data movement.

This is initiative setup by a consortium of genetic companies and researchers to encourage BRCA patients (including high-risk individuals) to input their data in an open access database.  Scientists can use this data for research purposes depending on the privacy controls participants have setup.

So how is “Free My Data” different from the other databases?  Well it’s data is coming primarily from patients instead of researchers.  For instance, there is a breast cancer mutation database known as BIC.  This database contains basic anonymous records of individuals / families with particular mutations and notes association with BRCA-related cancers.  Although it looks like BIC access is only intended for researchers, you can get access without proving any university-affiliation (which is what I certainly did).

From the BIC entry on my family’s specific mutation I found out that there are at least 17 people around the world with the same mutation.  That includes Swedish, Norwegian, Italian, and Brazilian families.   What I would love to have is a complete family histories which could shed light on this specific mutation.  Did other families see breast cancer in the 40’s/50’s like my family did?  Did other families witness ovarian cancer (mine doesn’t have any clear cases)?  This would be data that I would want to consider as well when making decisions if I also carry the mutation.  Unfortunately the BIC database doesn’t have this detailed info and the contact people are either researchers or Myriad so they are unlikely to be willing/able to provide more info.  Yes, interestingly, Myriad contributed to BIC too.  But I don’t see any data submissions after 2004 from Myriad or other researchers. I am not sure why but I am guessing that Myraid litigation was heating up and the database was primarily focused on identifying “clinical significant” mutations.  That is, mutations which increase the risk of cancer.  Once a mutation like my family’s had clear enough evidence of increased risk, it probably became less interesting to researchers.

Certainly I still interested in my family’s mutation!  And I would love to meet more people who could give me more info on it.  I tried to leave a message on  FORCE message boards but no response.  I found a blog by another woman who had the mutation and tried to connect to her, but since then she has sadly passed away due to early-onset breast cancer.  So I was excited to find “Free My Data” because I thought it might help me connect people with my mutation or their family members.  However I have hit a bit of another brick wall.  Although I could sign up and create a profile, I could not see any way for me to connect with other people in the database.  And the section where I can upload the mutation information also seems flat-out broken.  I have sent feedback to the website owners and hopefully will get a response.  But in the meantime, I still feel a bit lonely. Perhaps my new mutation page will attract fellow searchers.

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