Healthy Consent

Spent a couple of days last week at the 4^th International Digital Curation conference in Edinburgh. Lots of great speakers and the first day in particular brought up some interesting legal questions.

The keynote on the first day was provided by Prof David J Porteous, the director of the Centre for Molecular Medicine at the University of Edinburgh. He discussed a project called Generation Scotland which he is involved in. Generation Scotland is a partnership between the Scottish University Medical Schools, Biomedical Research Institutes, the NHS in Scotland and the people of Scotland which aims to create more effective treatments based on gene knowledge. The project works with genomic data, which is personal and therefore of interest to me from a data protection perspective.

Fascinating talk. Loads of interesting explanation of the background, why they do what they do and the potential benefits. An overview of the impact of environment, wealth, diet and smoking in life expectancy and brief discussion of how much health is dictated by those environmental factors and how much by nature, which is where the genome comes in.

Health is a major priority for the Scottish Government and it only takes a peremptory look at Prof Porteous’ ‘disease prevalence’ maps of the UK to see why. The DCC has its headquarters in Edinburgh and many staff at HATII in Glasgow – so you could say the future of excellent digital curation relies on the work of Generation Scotland ;-)

The subjects of the research conducted by Generation Scotland are volunteers. As will be immediately apparent the kind of data the project collects and uses is not only personal data but sensitive personal data (as defined by the Data Protection Act 1998) which brings up legal as well as ethical issues. The project addresses these through coding and anonymisation of the data to make it ethically sound and secure.

The discussion around consent was particularly interesting. The subjects give ‘open consent’ instead of the usual ‘informed consent’. My understanding is that, on a practical level, this means something like “Trust us. We don’t know what we will do with your data in the future but we will tell you and you have the right to withdraw if you don’t like it”.

This right to withdraw is important and, as Prof Porteous explained, a guiding principle of the project. Generation Scotland needs the ability to remove a subject’s data should they ask to be withdrawn. However, they can’t go back and change anything that’s happened already. This leads to all sorts of questions about what can still be inferred.

There was also some discussion about who owns and controls the data. As I mentioned the other day this is a tricky area. I learnt something new here. The data is owned by the Scottish Government. Some may be surprised by this, indeed that was my immediate reaction and I can see it argued two ways – but that is for another day (do feel free to remind me). But it must be remembered that the owners of the data may not be the same people as those who have rights or corresponding responsibilities in relation to that data. As I said last Monday – eugh!

Prof Porteous finished by touching on a catch 22 situation found in relation to the Generation Scotland work – the requirement for consent to gain consent. On the one hand this is restricting research, and in the vital area of health at that. On the other hand, moves to relax this have been criticised as threatening patient privacy. Do you have any thoughts on this? This is a new area for me and one I know very little of. But it sounds thought-provoking and ripe for a good debate – so let’s start one! (Another link on this...and another one to some people already having a debate)

Lastly, a question that arose for me in response to the answer to a query from a gentleman in the audience. Should consent requirements be different depending on whether the personal data is to be used on behalf of the nation or for commercial benefit? What do you think?

Well that’s me for now. I’ll be back later today. A big thanks to Prof Porteous for such a fascinating start to the conference.

P.S. He mentioned the a book called ‘The Grim Reaper’s Road Map - An Atlas of Mortality in Britain'. Great title - got to be worth a look on Amazon at least!

P.P.S. shocking fact – although life expectancy has been increasing over time the young of today are predicted to live less long than the generation before them. As an advocate of people taking increased responsibility for their own lives, and in particularly their own health, this to me sounds like a rather loud call to action. It’s not curation, or legal but it is very important.