International Digital Curation Conference Keynote

I'm not sure how much I should be blogging about this conference, given that the DCC ran it, and I chaired quite a few sessions etc. But since I've got the scrappy notes, I may try to turn some of them into blog posts. I've spotted blog postings from Kevin Ashley on da blog, and Cameron Neylon on Science in the Open, so far.

Excellent keynote from David Porteous, articulate and passionate supporter of the major “Generation Scotland” volunteer-family-based study of Scottish Health (notoriously variable, linked to money, diet, and smoking, and in some areas notoriously poor). Some interesting demographic images based on Scottish demography 1911, 1951, 2001 and projected to 2031, show the population getting older as we know. It’s not only the increasing tax burden on a decreasing proportion of workers, but also the rise of chronic disease. The fantastically-named Grim Reaper’s Road Map of Mortality shows the very unequal distribution, with particular black spots in Glasgow. About half of these effects are “nurture” and about half are “nature”, but really it’s about the interplay between them.

He spoke next about genetics, sequencing and screening. Genome sequencing took 13 years and cost $3B, now a few weeks and $500K, next year down to a few $K? Moving to a system where we hope to identify individuals at risk, start health surveillance, understand the genetic effects and target rational drug development, we hope reducing bad reactions to drugs.

Because of population stability, the health and aging characteristics, and a few legal and practical issues (such as cradle-to-grave health records), it turns out that Scotland is particularly suited to this kind of study. Generation Scotland is a volunteer, family-based study (illustration from the Broons!). There are Centres in Edinburgh, Glasgow, Dundee, Aberdeen; no-one should be more than an hour’s travel away etc. Major emphasis on data collection, curation and integration through an integrated laboratory management system, in turn linking to the health service and its records. Major emphasis on security and privacy. Consent is open consent (rather than informed consent), but all have a right to withdraw from the study, and must be able to withdraw any future use of their data (only 2 out of nearly 14,000 have withdrawn so far!).

This wasn’t a talk about the details of curation, but it was an inspiring example of why we care about our data, and how, when the benefits are great enough and the planning and careful preparation are good enough, even major legal obstacles can be overcome.