My recent blog Patient Data there for the asking not the taking has triggered some discussion on Twitter @WoodcoteEwan which is difficult to conduct in 140 character chunks. I’m trying to persuade the people to move the discussion here.
I’d welcome any new participants and hope those from Twitter will come an join us.
Cheers, and thanks for the more comfortable forum for this discussion.
Disclaimer up front, I am not a scientist or researcher, but someone who shares data (whole genome, phenotype) to the public domain, and I am familiar only with consent processes in the US, not the UK.
I have chosen to share freely, but I have done so with fully informed consent. On my side of the pond, forms gathering consent for data sharing usually end up at the bottom of a pile of papers pushed at patients before their care can commence and in most cases are barely read before they are signed. When one does read them, “research” is mentioned alongside boilerplate language about sharing with law enforcement when required and third party contractors to improve internal processes and blah blah blah. A patient that has hurried through a pile of paperwork really hasn’t given consent in any meaningful form even if it meets legal requirements.
We all produce data through using health services and research has a compelling use for that data. The general public has seen a series of data breaches from affair sites to tax data to health records and they have realized the value of their data, as you wrote. I asked on Twitter if there were any studies about patients’ willingness to share data in the future, after once having their data shared without what the patient considered to be full consent. In my opinion, any consent document that does not present a realistic view based on the statistical power of de-identification techniques of the potential for compromise of identifying information should not qualify as informed consent for anything beyond the most aggregated forms of data sharing.
Many people will share everything freely, but for the asking. In the long term, science may do itself a disservice by souring the public on data sharing if it acts now to maximize access to data at the cost of public trust and consent (as in the other Google agreements you referenced) at the same time public trust in government or even rationalism itself may be waning already.