Monday, October 27, 2014

This is my brain: sharing the risk

At a recent meeting at Leiden we talked about many issues related to data sharing. Previously I've been covering how to incentivise scientists to share data through data papers on this blog, but during that meeting we also discussed ethical issues. When we are collecting data about our participants (whether those are behavioural measures or MRI scans) we take responsibility for it. We make a pledge that we will make whatever we can to protect the identity of our subjects.

This is easier if we do not share data. Because fewer people have access to the data the likelihood of someone finding a method to connects brain scans to a particular person are lower. In reality this could be done either through a security breach (someone hacking the university network and obtaining the list of participants and their anonymous IDs) or by combining multiple datasets about one person to obtain enough details to be able to identify a person (this however applies only to participants taking part in multiple studies).

Even though we do everything we can to protect our participants we cannot give any guarantees. So in the unlikely event of revealing the identity of research study participants what is the risk they are exposed to? In the field of neuroimaging we are obtaining clinically relevant data. In other words we take images of the brain that can be used to help diagnose diseases.  In case of healthy controls all scans are are screened for abnormalities by a trained neuroradiologist and participants with any signs of a disease (stroke, tumour, vascular malformations etc.) are contacted and excluded from the study. Nonetheless new methods are being developed and maybe in the future someone will be able to find more about the health of our participants using the same data but with help of new techniques. Why is this important in context of privacy? Some countries have private health care system based on health insurance. The cost of insurance can be influenced by the health state of the person applying for it. Imagine that identities of participants from some publicly shared neuroimaging study have been leaked. A private health insurance company obtains that data and uses it to asses the risk of various brain diseases of a particular individual. If it is high they will increase that individuals monthly fee to reflect the risk of covering future treatment costs. They are an insurance company after all - it's like charging unexperienced drivers higher insurance rates because they are more likely to get into an accident.

This scenario is very, very unlikely. We are really doing a lot to protect the identity of our participants. There would have to be a security breach, biomarkers of brain diseases would have to be much better then they are now, and it only influences people with private health insurance. Nonetheless this scenario is not impossible. By sharing data we are exposing our participants a tiny bit more than we would if we did not share the data. I do believe that the benefit of shared data is much bigger then the risk (the scenario I described is really, really unlikely), but this applies mostly to the big picture. Individual participants will not care if their health insurance will get more expensive (although I would also argue that getting a free MRI scan screened by a specialist is a benefit to an individual).
My brain in all its glory
I have been promoting data sharing for several years now and I believe that I owe to my participants being exposed as much or more as they are. Therefore I decided to make structural scans of my brain freely available. I have uploaded my brain scans to FigShare - you can download them here. This is much bigger exposure than in any of the publicly shared datasets. Mostly because my name is already linked to the data, but also because the scan include not only T1 but also more clinically relevant T2 T2* and FLAIR sequences. Those who say that I am young and healthy so I am not really revealing anything I encourage to look for white matter lesion in my scans. Those who say I am living in socialist Europe I would like to inform that I have moved to the US and am currently covered by private health insurance.

The dataset of anatomical scans of my own brain has little scientific value (this is far from myConnectome - a project during which +Russ Poldrack scanned himself many times over a period of one year). It's more of an experiment. I'm curious if this can influence me in a negative way. Should I expect a call from my insurance company? Will I regret sharing this data? I'm pretty sure I will not, but time will tell.