‘Big data’ and biomedicine
Martin Richards points to a new report on ethical considerations.
Last time you visited your GP, did you give any thought to how that consulting room discussion might end up as data on a national database, being shared across the entire NHS?
Starting this spring, information collected from individual GP practices will be sent to the Government’s new Health and Social Care Information Centre (HSCIC) as part of the NHS care.data programme. You may have already had a leaflet through your door, explaining the aims of the new system (improving care by linking up data across the NHS) and how to opt out (informing your own GP).
The introduction of care.data is one development more in a growing trend for collection of data about individual people on a massive scale.
Developments in genome sequencing for example, exemplify the shifting sands. We’ve had the Human Genome Project, then the European 1,000 genomes project, then the UK10K project and now the Government’s 100,000 genomes project all generating unprecedented amounts of data.
Even in our everyday life we generate ‘biomedical’ data routinely, sometimes without really knowing it, for example through social networking sites, diet/exercise apps and supermarket reward cards to name a few.
New ways of handling data
Furthermore with increasingly sophisticated storage, digitisation and analysis technologies being developed, data sets can increasingly be shared, linked and pulled around in many ways and for many means.
With so called ‘big data’, new approaches to data analysis can be used, for example, to predict things about us from what we do on our laptops – from what we might be interested in buying, to whether or not a web surfer is pregnant.
In biomedical research there are growing trends to link and share very large data sets on an international scale and in this work the development of data science and new ways of handling and analysing data (‘bioinformatics’) plays a crucial role.
Such developments form the backdrop to a recent Nuffield Council on Bioethics consultation focussing on the ethical questions raised by the use of biological and health data. I am Chairing the Working Party that is investigating the ethical challenges raised by these developments and their social and legal implications.
Discussions on this topic are often expressed as a tension between people’s own interests in their privacy, and what is in the public interest. Ethical questions about people’s relationship to data about them – some will see themselves as the owner of their data – underlie conclusions about the way in which people’s right to privacy is expressed and exercised in a democratic society.
One particular concern is profiteering by commercial companies: the potential for targeted marketing of medical products, and of rising insurance premiums should the data get into the wrong hands.
Other concerns are about the mechanisms through which data sharing may be widely achieved: what constitutes appropriate consent? Under what circumstances can data collected for one purpose (e.g. medical records) then be used for another (e.g. biomedical research)? Are the anonymisation procedures robust enough to keep individuals unidentifiable?
There is also the question of when and whether an individual’s interests override the interests of their family members, for example, when genetic data is involved.
And if you don’t contribute?
Public interest arguments centre on the use of wide data sets in research to develop our understanding of human biology and health, to advance medical sciences or to improve the delivery of health care.
I suspect few would argue against the moral desirability of these goals, but again there are wider issues to consider. For example, questions around fostering solidarity: should people be enabled to opt out of socially beneficial systems, and what are the consequences for their own access to public services should they need them?
Guide for policy
Our aim in exploring these questions is to develop an ethical analysis to guide policy and governance approaches to the uses of biomedical data. We are grateful to all those who have responded to our consultation and sent us their views for consideration.
We have also been busy holding a series of evidence gathering workshops. All of this will inform our report, which is due at the end of this year.