The linked article describes how researchers can aggregate data from diverse digital sources. The data can then be available for anyone to use for research.
Collection of biological data used to be the sole preserve of scientists doing research. But with sensors and communications networks getting so cheap bottom-up biological and biomedical research is already starting as a result of increasing numbers of individuals uploading their test data web sites. Already this trend is yielding published research with valuable findings.
This brings up a number of interesting and challenging issues. Who owns the data? What about privacy?
It seems axiomatic that more data from a wide range of sources will ultimately lead to better results.
Never the less one of the primary issues driving HIPAA privacy rules is that a patient’s information must be protected and making it available to others is wrong. Wrong morally and legally. That seems to be obviously true on the surface. Our personal data should be held in confidence. But what if we choose to make it public by participating in a study? Do we still own that data? Who does; the researchers, the web aggregator or the public, as in the public good?
Is it OK to use personal medical data in a study without the patient’s permission if the personal identifiers are removed?
If a large medical organization, say a hospital or an HMO collects a very large set of data that could be analyzed to improve our understanding of a disease and treatment, why not?
In an ideal world all our medical data could be accumulated in a huge national (or for that matter global) data bank. This mass of data would be used by benevolent researchers to delve into disease patterns and treatment outcomes to provide a vastly improved understanding of the human condition.
Then in this ideal world the results would be readily available through online diagnostic data bases and treatment planning algorithms.
But of course in the real world we have fear, politics, bureaucrats, the nightly news and less than benevolent people.
Never the less I believe that digital technology and the ability to aggregate analyze and distribute that data with the Internet will eventually lead to improved medical and dental treatments.