what company did my mom's had BRCA testing in the late '90s?

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brcaquestion
brcaquestion Member Posts: 1
edited June 2014 in Genetic Testing

My mother was diagnosed with breast cancer when she was 38 yo and later passed away. I was 16 at the time, but I believe I remember discussion of her being tested for BRCA. I thought the results were negative, but I would like to confirm. She would have been tested sometime between 1998-2001, I believe.

I was hoping someone could tell me the company that was doing the testing at the time so I could write them to try and get the records. I know I could always try getting her dr records, but she had so many dr's (second, third opinions, etc) that I would like to just go straight to the source.

Thanks!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2014

    This company held the patent for BRCA testing until the recent Supreme Court decision.  They are the most likely company to have tested at that time.

    https://www.myriad.com/

    Unless your mom signed a release with them I am not sure they would let you have her results.  Good luck!


     

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  • lekker
    lekker Member Posts: 594
    edited June 2014

    Some academic research labs were also doing testing for a while I think. The University of Pennsylvania and U of Washington were two institutions researching BRCA, but myriad is probably the best place to start. You might have to make the request in writing with a notarized signature verifying you are her daughter (using your birth certificate and current ID) but I think you will be able to get some answers. I called MSK and Columbia in New  York to try to get my grandmother's records (my dad was a teen when she died and he couldn't remember which hospital). They said they would've given them to me with the proper documentation but  she died in 1956 and their records don't go back that far. Good luck! 

    Have you spoken with a licensed genetic counselor?  I highly recommend starting the process with that conversation. 

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  • Mutd
    Mutd Member Posts: 148
    edited June 2014

    It would be illegal under HIPAA law to disclose her test results to you. Neither the physicians nor the labs can do it if she didn't ask for disclosure to you back then. When the patient passed away, HIPAA pretty much locks away the medical records...

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  • lekker
    lekker Member Posts: 594
    edited June 2014

    Mutd -  not necessary. http://www.hhs.gov/ocr/privacy/hipaa/faq/right_to_access_medical_records/222.html

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2014

    lekker - your link was not live, so here it is again:

    http://www.hhs.gov/ocr/privacy/hipaa/faq/right_to_access_medical_records/222.html


     

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  • Mutd
    Mutd Member Posts: 148
    edited June 2014

    HIPAA offers vague disclosure exceptions like this one, but the problem is that they are untested in courts. So in practice the providers and their legal departments don't thread there. They prefer to err on the side of caution and not to disclose anything to anybody without specific prior authorization. Among the Genetic Counselors, this is a consensus view: deceased relatives = inaccessible test results.

    Now if you have a good lawyer who'd work with your physician to badger Myriad with disclosure-for-treatment requests, and if you get any traction there, then please do share. There are thousands people in the same boat as you, "brcaquestion". A legal precedent may be a miracle for them!

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