Uk biobank is an interesting initiative. Data are being collected from a large sample of volunteers (half a million) about their health. This involves a medical examination, and a series of follow-ups. The funding is from the Government, publicly funded entities like the University of Manchester, and charities like the Wellcome Trust.
I happily said yes when I was sent a letter with an invitation. Afterwards, reading the document I was given I was a bit puzzled by the line about possible “commercial” uses of the results. I phoned and asked more information.
I was told that after analysing the data, possible risk factors or other discoveries would be passed on to pharmaceutical companies who in turn might develop a commercial use of the information (for a fee paid back to Biobank).
I’m not 100% clear on what one might develop from knowledge coming from population data without keeping the results secret (which Biobank says they will not do). Nevertheless, I wanted to be on the safe side and I said that I prefer my data to be available only to publicly funded researchers whose results would be publicly available. I was told that this was not possible, and they politely suggested that I withdraw my consent so that my data would not be available at all.
I did so, but I still feel that there is something wrong here. My data were there, money had been spent to collect them, not to mention my own time, so why was it not possible to ensure that whoever had access to them would do so only for research purposes (rather than commercial purposes)?