Aggregated News
We have until March to opt out of the care.data initiative. The ‘theoretical risk’ that we might be re-identified from our personal data once it is made available to third parties is a compelling reason to opt-out. However, this is not the only reason. Care.data is part of a major legislative programme that includes the Clinical Research Practice Datalink (CRPD) and the 100,000 genome project – through which whole-sequenced genomes will be put to commercial use. These major infrastructural developments have been accompanied by radical changes to privacy law that have resulted in a cultural shift in the governance of information.
These sweeping changes in privacy law were introduced without consultation, and the risks they entail will be borne by those whose medical records may be accessed without their consent. How did we get to this point? Fourteen years ago, written evidence by SmithKline Beecham to the Select Committee on Health, House of Commons, advanced the view that the “NHS represents a singular but under-utilised resource for population genetics, and healthcare informatics more generally.”...
These sweeping changes in privacy law were introduced without consultation, and the risks they entail will be borne by those whose medical records may be accessed without their consent. How did we get to this point? Fourteen years ago, written evidence by SmithKline Beecham to the Select Committee on Health, House of Commons, advanced the view that the “NHS represents a singular but under-utilised resource for population genetics, and healthcare informatics more generally.”...