The Royal Society and the British Academy have recommended the UK create a new oversight body to shape policy around the way personal data is used, or risk the loss of public confidence and of potentially beneficial projects.
In a new study, the two bodies cited an increasing lack of clarity around how sensitive data can legitimately be used and described a set of principles they said can guide future policy.
They said this lack of clarity, and the public unease it causes, has already caused the demise of schemes that could have provided significant benefits, such as the NHS’ abandoned care.data programme.
“The care.data centralised records system, which would have seen GP patient records opened to analysis by the National Health Service (NHS) and some third parties, could have provided an invaluable research resource and an important nationally strategic data set,” the groups said in their report, “Data Management and Use: Governance in the 21st Century”.
The controversy around care.data is an example of how data governance concepts such as privacy and consent are “under unprecedented strain”, with their meanings in policy, law and public discourse having shifted.
The study compared the present controversies around the use of large-scale data analytics to those that accompanied the introduction of the printing press or the weaving machine.
“While history does not enable us to predict the future, it suggests that the the potential for controversies around new ways of using and communicating data is very high,” the report said.
“Current experience also suggests that, without a framework giving entrepreneurs and decision-makers sufficient confidence about acceptable data uses, applications that would have been widely welcomed may be lost.”
The report cited the increasing collection of often intimate personal data from devices such as health monitors, social media sites, sensor-equipped retail spaces, public Wi-Fi hotspots and on-demand taxi services.
Such data is often collected without the person’s explicit knowledge, with information from different sources being used to reveal private information about an individual.
“The notion of privacy is also being stress-tested through the increased power of algorithms and their ability to infer and predict behaviour,” the study said.
In light of such ongoing changes it argues there is a “clear need” for a new body to “steward the landscape as a whole, rather than being directly responsible for implementation within specific domains”, as are organisations such as the Information Commissioner’s Office (ICO).
The body would be tasked to ensure that data policy was governed in line with clear principles, the primary one being that data is used to promote “human flourishing”.
Such high-level principles must be seen to “shape all forms of data governance” in order to ensure public trust, the report argued.
The oversight body should be independent, connected to diverse communities, having expertise across disciplines, coupled to decision-making processes, durable and visible, and globally relevant while remaining nationally focused.
It would be involved in monitoring and evaluating the projects and data mechanisms required for future public services.
The framework such a body would provide could have great benefits for innovation, the report concludes.
“Rather than restricting innovation, the report finds that a clearly defined framework setting out acceptable uses of data would give stakeholders the confidence to explore new technologies and enable society to reap the benefits that these technologies can deliver,” it said.
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