More and larger biobanks are built for medical big data research. Are we talking to quietly about security – or too lod? The latter, according to two scientists that the Swedish Research Council’s journal Curie has talked to.
This is an extract from the Swedish Research Council’s journal Curie. Here you can read the whole article (Swedish only): www.tidningencurie.se/22/nyheter/nyheter/2014-10-13-forskare-oroliga-for-biobanksregler.html
Gilean McVean is Professor of Statistical Genetics and leads the Big Data Institute at the University of Oxford.
– Big data is essentially about collecting large amounts of information from various sources and structure it so that it becomes possible to do research on it, says Gilean McVean.
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In a project called Genomics England genome from 100,000 people are sequenced and linked to patient records so that it becomes possible to study cancer development and drug effects, among other aspects.
– This is done on a scale quite unprecedented. The data volume is huge, the speed is tremendous, the statistical challenges are enormous … In the end, of course, is the goal to be able to use this information to provide better care to the patients of the future.
Is it possible to ensure that participants remain anonymous?
– The biobank knows who the individuals are, otherwise you would not be able to collect more data on them. But I as a researcher may never know who submitted the samples. At the same time, I must say that the perception of anonymity in genetic research will be a bit strange – your DNA makes it always possible to identify you, even if it can be awkward. I think the discussion needs to be less about privacy and more about the research community’s approach and ethics, says Gilean McVean.
He points out that anyone using credit card allows its economic habits to be recorded over time, and _ the information can be sold and bought. For some reason, he notes, the public does not seem to be as concerned about it as about the possibility that their genetic information will leak out.
