Think Gene: Why DTC Genomics is Dead: The Coriell PMC
Coriell Institute
· 1 year 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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· 1 month ago
Ultimately, if the government is willing to pay to bring SNP chip genome testing to the masses, then it will be willing to pay to bring genome sequencing testing to the masses when it’s cheap enough
Ann Turner
· 1 year 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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· 1 month ago
What if this study had the institutional support of the medical establishment, the scientific establishment, and American government and thus was unlikely to try something illegal like operate a non-CLIA laboratory or suggest profit-sharing to doctors to sell tests?
John C
· 1 year 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.
neandrothal
· 1 year 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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· 2 months ago
Hating New Jersey ain't hard. You just have to go there for one day and when you'll get out it will be the happiest moment of your life.
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· 1 month ago
Not get enough volunteers for their free, riskless, non-invasive saliva test worth over $2500 in sexiest, newest medical field? The government will pay to hand some nurses orgenes and waivers to distribute at a few hospitals and universities.
So, what if a government institution, figuring they’ve already spent $3 billion dollars on the Human Genome Project, shrugged, and threw down a few spare million to learn how this information is actually relevant to medicine?
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· 1 week ago
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.
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· 6 days ago
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.
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· 5 days ago
The goal is to better understand the impact of genome-informed medicine and to guide its ethical, legal and responsible implementation. This research study is a forward-thinking, collaborative effort involving volunteer study participants, physicians, scientists, ethicists, genetic counselors and information technology experts.
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· 5 days ago
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.
All Comments
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.
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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