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January 1, 2015

Wealth of information but poverty of understanding

Reuel S. Amdur

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"I love the long-form census," declared Bartha Knoppers in response to a question from the Charger. She was speaking at the Parliamentary Dining Room in Ottawa last October 30 as part of the series of talks sponsored by the Federation of the Humanities and Social Sciences. Her topic was "The Impact of Big Data on the Health Care System." Knoppers is Director of the McGill Centre of Genetics and Policy and Canada Research Chair in Law and Medicine.

As she explained, in today’s world there is a high volume of data, which flow with high velocity.  They are complex and have the potential for rapid accumulation.  We have, she lamented, a wealth of information but a poverty of understanding.

Here is where big data come in.  They do not consist of single factors.  Rather, they consist in a nexus of factors.  Health and susceptibility and resistance to disease may be affected by weather, traffic, etc.  And impacts can be global.  Science is increasingly a global pursuit.

As an example of the use of big data, scientists have identified 41 new factors associated with the risk for breast cancer.  With more data, we can move from populations to subpopulations, and in the end we can make findings that affect the individual.  A giant gene bank gives us a take on disease.  It makes it possible to identify high-risk and high-cost patients.

Medical research now relies heavily on self-selected patients.  Use of medical records would be far more meaningful, but only 14% of doctors are able to share medical records electronically. 

Big data from such records might be especially valuable in studying rare diseases, which are also known as orphan diseases.  She noted that some organizations of those affected by rare diseases have established their own big data collections.  She quoted one authority who said that “. . . we now have discrimination down to a science.”  That is, ability to discriminate one factor from others. 

Knoppers noted a dilemma facing the field.  We need the big data, but do they constitute a danger to privacy?  To what extent can a datum be traced back to the individual? 

She is of the opinion that the use of big data requires a privacy oversight, but we need to look not just at the risks but also the benefits.  The challenge is how to make data safe and secure and how to mitigate privacy concerns. 

In the world of Big Research and Big Data, we need, she urged, Big Ethics, proper oversight.  There is a need for a safe haven, where we know that data are safe and secure. 

Yet, the possibilities inherent in big data should, she argued, not be ignored.  Everyone has the right to benefit from the knowledge.  She cited Article 27 of the Universal Declaration of Human Rights, which says, in part, “Everyone has the right freely to . . . share in scientific advancement and its benefits.” 

She noted that the use of big data shifts the scientific process.  Ordinarily in science we begin with a hypothesis and then gather the data.  In this area, however, the data come first, then the hypotheses. 

When asked where the use of big data is most advanced, she cited Estonia and Demark.  In Denmark population registries are used in determining where to place roads, schools, etc.  While we need more data, she observed, what is lacking is trust, from patients and researchers.

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