Wednesday, October 24, 2012

Open Data applied to Medical research Data

http://www.ted.com/talks/john_wilbanks_let_s_pool_our_medical_data.html

John Wilbanks in his video proposes a logical extension to the concept of open data as applied to personal medical data. While open data typically supports data of a non-contextual origin, John Wilbanks poses the question, " What if medical or genomic experimental data on human were cleansed of all personal identifiable information than released to the world-wide research community?  Information related to medical research subjects requires informed consent and an extremely rigid process protecting the rights of test subjects and their respective privacy, However, John Wilbanks contends that this same rigid process is actually impacting our ability to extract information in a timely and efficient manner. Fundamentally, data collected from small samples can hide information that may be exposed in much larger samples. However, under current research guidelines, raw data collected for cancer research cannot be shared with researchers investigating DNA hereditary defects. However, what would happen if research subjects were asked if there data could be used for other areas if all personal data was removed?  One approach proposed by Mr. Wilbanks is to use a Portable Legal Consent for Common Genomics Research (PLC-CGR). This is essentially  an experimental bioethics protocol allowing for research subjects to consent to allow research subjects to accept that once the primary experiment is over, their data can be used  anonymously in other forms of research. This would essentaillly great repositories of big data where patterns may emerge that were hidden in the realms of smaller pools of  research data.

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