BRCA Mutation Tool

MiniMacsMom

I am not sure if you are supposed to "promote"  other forums on here, but the FORCE website just started an awsome BRCA mutation tool.  You can enter you data  or look up a mutation and it give you a list, so you don't have to sort through the posts on a forum.  Give it a look... Again you don't have to post your person email or phone or address or anything, and you can put down your ancestry, Jewish, German, Mexican, ect... to see if there are any connections:

http://www.facingourrisk.org/information_research/genetic-mutation-database.php

AnacortesGirl

Thanks for posting this.  There were only 21 BRCA2 listed but I went ahead and added mine so now there are 22!

Maya847

There are 26 now  for BRCA2.  I thought there would be more...but guess they have to start somewhere.. 

MiniMacsMom

Yeah, its a brand new tool.  They just posted it a few days ago, I don't think their board is a well populated as BC.org

invisible

Nice tool, but to truly break myriad's stranglehold on research, they should also be recuiting information on personal history of cancer from registrants.  Myriad does not currently share this information with open databases. 

MiniMacsMom

I asked the mod if they could add that as a option... on the general forums there is a thread about the new tool where you can post recomendations!  Not sure how long it would take to change the "generator" though!

jennyboog

Thanks, I'll go check it out.

Mutd

Great tool. I was first suggesting it to Sue Friedman of FORCE years ago, it's great to see the idea fleshed out. @ Invisible - Sue's main problem with the database was exactly the one you mention, about sharing personal health information, privacy protection, proper consent, this sort of stuff.

This is the reason why no genetic labs anywhere in the world share the cancer history info of the patient. Neither does the BIC consortium.

 The other legal scare is the fear that people will use the database info to make medical decisions (and I mean, isn't it the whole point?) ... so then some of them will take the database to court for malpractice, unlicensed practice, all sorts of legal wrongs. 

invisible

I get that the personal history info shouldn't be "available" in the same way as the rest of it - god forbid anyone should use it to make decisions without appropriate counseling,  however, we're freeling giving PII (personally identifiable information) and medically priv. info already.  I'd freely give additional information to assist in research.  I'm sure they already have protocols for collaborating with researchers. 

MiniMacsMom

I agree.  You don't have to give your name number or email, you can choose just to give your BRCA status and ethnicity, why not cancer status.  Oh well.  Maybe someday.  It would be interesting to see if the Jewish BRCA mutation has a different average risk of cancer than some other random mutation... Ect.