Up at 5AM: The 5AM Solutions Blog

A Review of 4 Data Standards Initiatives for Biobanking

Posted on Tue, Nov 05, 2013 @ 06:00 AM

Last week we discussed three controlled vocabularies that are used in biobanking. This week, we will discuss some data standards that use those vocabularies to make shared data models that can be used to shape and share biobanking data.

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Tags: biobanking, data standards, ISBER, biospecimens

A Special Kind of Patient Philanthropy

Posted on Thu, Mar 01, 2012 @ 06:00 AM

It was recently announced that the Cleveland Clinic and 23andMe are teaming up to seek out volunteers for a study where patients will be asked to provide a saliva sample for DNA analysis and agree to participate in online surveys about their experience with Parkinson’s Disease to study the interactions between genomics and the disease. I wondered, how powerful is the draw of this kind of personal philanthrophy, when the donation (be it a donation of tissue or participation) is of the self rather than of the pocketbook? And to arrive at such a decision, what are the motivations, reservations, and implications?

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Tags: personal philanthropy, tissue donation, organ donation, study participation, biospecimens, 23andMe, Parkinson's Disease, Cleveland Clinic


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