The DeepMind debacle demands dialogue on data

Hetan Shah in Nature: “Without public approval, advances in how we use data will stall. That is why a regulator’s ruling against the operator of three London hospitals is about more than mishandling records from 1.6 million patients. It is a missed opportunity to have a conversation with the public about appropriate uses for their data….

What can be done to address this deficit? Beyond meeting legal standards, all relevant institutions must take care to show themselves trustworthy in the eyes of the public. The lapses of the Royal Free hospitals and DeepMind provide, by omission, valuable lessons.

The first is to be open about what data are transferred. The extent of data transfer between the Royal Free and DeepMind came to light through investigative journalism. In my opinion, had the project proceeded under open contracting, it would have been subject to public scrutiny, and to questions about whether a company owned by Google — often accused of data monopoly — was best suited to create a relatively simple app.

The second lesson is that data transfer should be proportionate to the task. Information-sharing agreements should specify clear limits. It is unclear why an app for kidney injury requires the identifiable records of every patient seen by three hospitals over a five-year period.

Finally, governance mechanisms must be strengthened. It is shocking to me that the Royal Free did not assess the privacy impact of its actions before handing over access to records. DeepMind does deserve credit for (belatedly) setting up an independent review panel for health-care projects, especially because the panel has a designated budget and has not required members to sign non-disclosure agreements. (The two groups also agreed a new contract late last year, after criticism.)

More is needed. The Information Commissioner asked the Royal Free to improve its processes but did not fine it or require it to rescind data. This rap on the knuckles is unlikely to deter future, potentially worse, misuses of data. People are aware of the potential for over-reach, from the US government’s demands for state voter records to the Chinese government’s alleged plans to create a ‘social credit’ system that would monitor private behaviour.

Innovations such as artificial intelligence, machine learning and the Internet of Things offer great opportunities, but will falter without a public consensus around the role of data. To develop this, all data collectors and crunchers must be open and transparent. Consider how public confidence in genetic modification was lost in Europe, and how that has set back progress.

Public dialogue can build trust through collaborative efforts. A 14-member Citizen’s Reference Panel on health technologies was convened in Ontario, Canada in 2009. The Engage2020 programme incorporates societal input in the Horizon2020 stream of European Union science funding….(More)”