Coriell is Medical Research: Responses to Common Concerns
Coriell Personalized Medicine Collaborative (Coriell PMC) launched its public website this Monday. Frankly, I think this is a non-story until tests results are published and the service is available in a major metropolitan area. This is coming. Until then, however, there has been some confusion about Coriell PMC on the Internet. I hope that the following addresses the most major concerns:
Coriell does not provide access to all the raw genomic data, and that is unethical.
Coriell does not provide access to the raw genomic data because the scientists who designed the study decided that would introduce extraneous variables. Extraneous variables diminish the precision of the research and stretch Coriell’s ability to ensure adequate subsequent medical services like genetic counseling. It’s true that Coriell PMC would be a more complete service if it also released the raw genomic data. However, it would then be less rigorous science, and Coriell PMC is medical research first.
Would releasing raw genomic data with the genomic test report improve clinical outcomes? This itself is an excellent research question which Coriell may study in the future.
Coriell PMC is only available in a controlled medical setting and not unrestricted to the general public, and that is unethical.
Coriell PMC is only available in a controlled medical setting because, again, it’s medical research. Controlling the setting of the study improves scientific confidence in its conclusions. Further, since the objective of Coriell PMC is to determine clinical application of select genomic tests, Coriell PMC will be used to provide medical advice. Medical advice is carefully regulated such that it is only provided only in a licensed, liable medical setting.
Coriell is paternalistic.
I don’t understand how this opinion is relevant to the production of useful medical research. However, it seems to derive from dissatisfaction regarding that raw genomic data isn’t released to participants, that the test is only provided in a medical setting, and Coriell’s lackluster public relations capacity outside of its immediate geographic area. I’ve addressed former two of these concerns above. As for the latter, two words: “Non Profit.”
Coriell is restricting the public’s access to its own genetic data.
I do not understand how the introduction of a genomic test provided as voluntary medical research at no cost to participants by a licensed non-profit medical research institution restricts access to anything.
Think Gene at Technorati
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