4 comments

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  Coriell Institute

  10 months ago

  Just to clarify on a few points… Coriell is not a government institution nor is the Coriell Personalized Medicine Collaborative (CPMC) a government-funded study.
  
  The Coriell Institute for Medical Research is a 501(c)(3) non-profit, basic biomedical research institution that is supported by philanthropic donations and by NIH-funded grants. The five-million dollars we have raised to date for the CPMC has come solely from private foundations and individual donors.
  
  Additionally, the CPMC is not simply a “free medical test,” rather it is a research study that aims to determine the utility of using genome information in health care. Evidence-based studies, like the CPMC, are needed before we will fully understand the impact genomic information may have on an individual’s health care.
  
  Our current focus is on individuals in the Delaware Valley, primarily to ensure our study is performed in a medical context, meaning we reach out to both medical professionals and their patients to educate both parties on genome-informed medicine. The CPMC web portal will be live toward the end of the year with genetic results.
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  Ann Turner

  10 months ago

  But on the downside ... according to what some volunteers have told me, Coriell will not give you access to your raw data, only their interpretation of items that they consider "medically actionable."
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  John C

  10 months ago

  I feel better about this already. God knows what happens about samples sent through the mails and the variations of collection by the patients doing it themselves invite contamination.
  
  But I will try something. I will go to my Kaiser physican and request a full genome collection and evaluation "for the record" so it would be handy for any future care. I could request the raw data to put against the databases for the functionality as well as recieve the usual medically pertainent information. I could suspect that the lab services in this case have bought rights to deal with patented sequences. I will let you all know.
  
  My only sense of the testing services is information is private and it does not have to go into one's medical record and risk becoming a liability against applying for insurance coverage and employment.
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  neandrothal

  10 months ago

  Actually, GINA says that insurers/employers cannot request or require that you take a genetic test. So discrimination based on *not* having a test is still illegal.
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