The Academy of Medical Sciences is a professional body that operates within the mainstream activities of government funding and science based medicine. The group acts as a vehicle for professional researchers and their latest complaint focuses upon the difficulty they have to access medical data.
They note that the onerous bureaucracy of the data protection act , and its variable interpretation by public bodies, has led to a swift decline in their access to date for epidemiological and other public health studies. It is not clear that the trend towards increased control over the use of personal data had to lead to a decline in the use of such data for a public good. With such laws. a simple exemption would have sufficed to maintain access to this data on an anonymous and aggregated basis, with voluntary 'opt-outs' for those who did not wish to participate in such programmes.
Instead, arbitrary interpretations of the data protection regulations, has prevented access to medical records just as databases are proving more useful at aggregating and mining data for public health purposes. This is another example of complicated regulation causing unintended and pernicious consequences.
Yet, there is one theme that can be teased out of this affair, apart from the larger narrative of poor regulation. The professional classes enjoyed a paternalistic relationship with state structures, acquiring funding, status and power over the poor bloody infantry, or as we know them, the consumer. They did not have to take account of individual concerns over data when they were conducting their programmes.
The report, Personal data for public good: using health information in medical research', can therefore be broadly welcomed, for arguing that public education and engagement are necessary in order to place such studies within an ethical context. The danger is that, just as regulation has caused the problem in the first place, faux consultation from designated self-identified consumer or patient groups will be used to justify public health programmes without ensuring that the final mile is achieved: the permission of an individual to allow their data to be used in public health or other studies.
The danger, as future posts will map, is that states will use consultation exercises and focus groups as alternative channels to representative institutions, in the name of deepening or widening democracy and popular participation. We should consider the Napoleonic joys that participatory or deliberative democracy may bring....