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Disease Registry Gives Patients Some Privacy

filesFrom Mashable and MIT:

As advances in genomics, molecular analysis, and data processing have propelled disease research forward, scientists and drug developers still face a formidable challenge: recruiting patients for their studies

via New Disease Registry Gives Patients Some Privacy.

I first clicked the linked article thinking it would address the primary issue I have been thinking and writing about that I call Who Owns the Data?

However it addresses only a small portion of the issue and that is how to recruit subjects for medical research and to assure them that they will retain some privacy and anonymity.

The bigger issue remains. Who Owns the Data?

  • The individual the data is about?
  • The medical dental professional who collects the data and has an obligation to act on it?
  • The software application that allows data collection and storage?
  • Society or the public as in the public good?

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