Color Genomics

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Ddw79
Ddw79 Member Posts: 533
edited February 2016 in High Risk for Breast Cancer

A strange thing happened with this company yesterday. I sent in the saliva sample mid July. Heard nothing from them until yesterday. They called asking me for documentation and report on previous genetic testing. Has anyone else received this request?


In truth I am miffed that they asked and wonder why and if they will go ahead with the testing since I cannot provide them with that report which was done in a study setting twenty years ago. I thought that this info was protecteded by HIIPA. I do not think they have a right to request this info. Anybody else bothered by this?

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2015

    There may be a protocol that requires verification of past results, in order to confirm accuracy of their current findings. Did you self-report your BRCA status to them? It could have to do with their own internal quality control standards since they are a new company. I do not have any personal experience with them so did not run into this.

    By offering a sample and requesting laboratory analysis, they became your health care provider, to a certain extent. They can't delve into your prescription records, for instance, but prior genetic testing results would be relevant. Perhaps you signed a release for pertinent information to be shared and that allows them access. Your concern does address why, in the past to avoid insurance coverage issues, people chose to be anonymous...

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2018

    Hi:

    Even in the absence of an agreement, consent, release form or the like, personally, I do not think it is improper for them to simply ask you for such information, nor would it be improper for you to decline to provide further health information if you wished.

    The information on their website indicates a little about their process (emphasis in text added by me):

    "Color is physician-ordered.

    All Color tests are ordered by a physician—either your own or one designated by Color who will review your information and can order testing on your behalf. If any questions arise, the physician will contact you. Your physician will receive a copy of your results if they have ordered testing for you, or we can send them a copy per your request.

    All results are reviewed by a physician.

    Every result is reviewed by a physician before it is released. Your genetic testing results as well as your personal and family health history are taken into account."

    Perhaps your testing has been completed and analyzed, a report is now in the process of being prepared, and they would like to make it as informative and comprehensive as possible for you, in light of your personal and family health history (including prior genetic testing). If you had some information about any genetic changes discovered in the past, it might be helpful for them to know about it. For example, did Color Genomics see the same thing, something different, or something additional? Having such prior information could permit them to address the implications of this or similar questions, and might (or might not) make the final report more comprehensive and informative. With no information about prior test results, they may include some caveats regarding their conclusions or recommendations, if any. Just speculating.

    If such information is not available or is not shared, the patient can seek advice from their own genetic counselor about how the Color Genomics results and any prior genetic testing results should be interpreted together, and how that might alter the recommendations, if any.

    It sounds like you don't have any report or further information to provide to them?

    BarredOwl



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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2015

    No real thought except there was a glitch in their computer on my testing and it said they were in the verification process i.e. test was done and that was in April. I verified that the test was done w a representative then. I didn't get results until Aug. Thus I got the feeling that they were being uber careful about checking and rechecking things since they're such a fledgling company. I told them my previous testing was at Myriad and I had no problem with them checking. Hope you get results soon and they are what you hope.

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  • Ddw79
    Ddw79 Member Posts: 533
    edited September 2015

    thanks ladies and in fact I have nothing to offer. I am not privy to my records and study documents. I paid for none of it either. I'm afraid that this organization doesn't want to be proven to be wrong against Myriad testing done 20 years ago. That's their problem I would think. I suppose they can talk physician to physician if reults diverge

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2018

    Hi Ddw79:

    Good idea re possible resolution of divergent results, if any. There may be quite reasonable explanations for differences after 20 years, including a more thorough assessment of the genes made possible by significant improvements in technology.

    BarredOwl

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  • Ddw79
    Ddw79 Member Posts: 533
    edited September 2015

    So Farmer you were fine with them obtaining previous genetic test results?

    I was kind of hoping to see totally independent results. In any case I couldn't open my file if I wanted to at this point . Thanks to you all for your input

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2015

    Yep - no issues here. Honestly I was thrilled to get it done at that price. I felt like the big genetic testing houses would quash (sp?) the co like 23andme so I rushed to get in line. In your early screening was Mary Claire King involved? She is one of Color Genomics supporters/backers/ advisors. Wonder if she has any ideas about what happened to the early test results.

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  • Ddw79
    Ddw79 Member Posts: 533
    edited September 2015

    yes she was on the front lines of the testing for BRCA 1 back when I had it in 1991. I was of course told the results but that's it , no records . I wonder if they are going to give me results from Color without the previous info. I don't want to get involved if Color and Myriad come up with different results. I'm going to let them battle it out if it comes to that. Who's correct anyway


    Those early results were part of a very strictly controlled medical study . Files are locked for purposes of confidentiality . That's all I know and until yesterday I never questioned reliability or validity. It's feeling to me like a conundrum.... A glitch they hadn't counted on maybe

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2015

    I'd be willing to bet the results of the BRCA are the same and they are just checking their quality control boxesbefore they give you results.

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  • Ddw79
    Ddw79 Member Posts: 533
    edited September 2015

    thanks Farmer Lucy.

    I'm thinking and hoping the same myself. I'll post here when I get results

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  • KBeee
    KBeee Member Posts: 5,109
    edited February 2016

    Did you ever get results???

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited March 2018

    Dwd79, correct me if I am wrong, but your post in this thread (the first reply in the thread) seems to indicate your results from Color Genomics were negative:

    https://community.breastcancer.org/forum/47/topics...

    See also,

    https://community.breastcancer.org/forum/47/topics...

    BarredOwl

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