Public Services

Data ethics, AI health innovation and the lessons from GM crop debates

Neil Merrett Published 15 May 2017

Debate on challenges and concerns from personal information and AI innovation argues that initiatives to ensure public confidence in ongoing data revolution must go well beyond Whitehall


Amidst a drive for wider public support in integrating personal information with Artificial Intelligence and machine learning technologies, greater use of non-personalised and open data may be an important tool in gaining trust to balance privacy needs with improved public service delivery.

The comments were raised during a debate today held by industry association techUK to consider data ethics and governance. Stakeholders from academia, the private sector, as well as independent scientific bodies such as The Royal Society considered the importance of drastically rethinking the role of data and its impact on jobs, education and public services, not just from the perspective of Whitehall, but through civil society, schools and the media.

While the opportunities for using broad data sets of personalised information with AI in healthcare is potentially as a high value prize in Whitehall and local government, some experts argue the less controversial use of non-personalised data could help change minds in trying to ensure citizen consent.

Backing the formation of an independent data ethics council, Hetan Shah, executive director for The Royal Statistical Society, said that existing concepts and legislation with regard to individual privacy risked being stretched to "breaking point" as technology advances.

Among the key challenges Shah indentified were issues of consent and governance around data being held both by government and corporations. He also played up a need for constructive discussions around the implications of not using personal information to inform services in areas ranging from transport and agriculture, to healthcare.

With next month's General Election focused on the broader political issues of the present, notably Britain's exit from the EU, the debate warned that there was likely to be limited debate on how to prepare for the potential industrial-revolution scale of AI and privacy over the next month.

Shah therefore reiterated his call for an ethics council to help consider the hugely complex and varied challenges posed to humanity from emerging information technologies such as fears of data monopolies, and ensuring trust in organisations to hold and share sensitive personal details.

The preferred model for the proposed council was a non-regulatory, independent organisation able to consider the broad complications of data use, storage and privacy for government and other stakeholders.

"The reason we think this is necessary is these issues are not going to go away and the ethics themselves are in flux, so you need people to think about this," said Shah. "We're less keen on the idea of new regulators; we think there are regulatory bodies already out there. So if we need new powers we should give it to the Information Commissioner's Office (ICO) and the UK stats authority and others," he added.

While he noted that civil society was raising issues of privacy, there was seen to be little non-governmental organization (NGO) focus on wider issues to be considered, including making a case for the use of data in a sensible way that would prevent potential benefits going unrealised.

Over the last few years, NHS England has sought to try and create a data set of information held by GPs that could be used by health bodies and partners to better realise clinical and operational efficiencies. These plans came under sustained opposition from privacy groups and patient bodies over fears about transparency and communicating with patients.

The project, known as was later abandoned under the recommendation of National Data Guardian Dame Fiona Caldicott while a new model for patient consent to share information is decided upon by Whitehall following further consultation. The project was intended to have gone live in England during 2015. No preferred model has yet been outlined by government on opting out for sharing patient data.

GM crops and the battle for hearts and minds

Citing debates in recent decades over GM crops, Shah argued that a failure to ensure public support and understanding of broader science held back potential work around innovation and how best to proceed.

"In a sense, the science pointed to one direction but we never took the public with us. So that set the science back 20 years because the public said 'no, don't go there'. That is the key thing we need to avoid in this whole space," he said.

The recent passing of the government's Digital Economy Act ahead of the General Election on June 8, criticised by some privacy campaigners for failing to address concerns about government's broad ability to transfer and share personal information with limited oversight, was seen as broadly positive by Shah in some areas. He pointed to commitments to strengthen how the Office of National Statistics (ONS) can bring together data from Whitehall as a good starting point to support efforts to try and improve information sharing.

While healthcare was viewed as having huge potential for innovation, Shah noted it was an area where there was significant concern from the public with regards to trust and sharing such details beyond direct care.

By comparison he said that the use of non-personal data such as transport information, while seen as less high value and relatively "boring" to possible gains in health, was proving to be transformational in how the public inform themselves and choose to travel.

The value of playing up and focusing on such projects was seen as one potential method to win over citizens and engage them in debate over how data sharing may improve service provision.

However, time is another crucial challenge.

Antony Walker, deputy CEO at techUK, noted that with an ageing population in the UK, the cost of the NHS continues to increase year-on-year. He argued that long-time sustainability of the service was dependent on finding ways of using data to realise efficiencies in how care is delivered. In particular, he expected more broader support for applications that may make use of personal information and AI that can improve and increase overall human interaction in social care delivery, a view shared by other speakers in the debate.

However, some delegates warned during the session against completely ruling that non-personalised data innovation should be solely focused in the public sector, noting that Transport for London (TfL's) approach to using personal information such as wi-fi signals, albeit with transparency of intent, was creating a more efficient understanding of key passenger needs. As opposed to paper surveys, one delegate claimed a limited trial recently undertaken by TfL of phone signals had already provided much more efficient information to plan for major connections and routes on the capital's transport network.

Yet the debate panel noted that there remained clear and important differences between an individual's personal data being used to give recommendations on retail preferences or travel, as opposed to trying to inform clinical decision making. The drive for ethical frameworks to drive future service design and implementation remains an ongoing concern.

The stem cell counterpoint

Claire Craig, director of science policy for The Royal Society, said that there was a real urgency to trying to ensure clear ethical frameworks and routes for innovation in data sharing, arguing that it was not impossible to inform and gain broader public support for data innovation.

"The counterpoint to the mention of genetically modified crops is what happened with stem cells," she said.

While accepting that the scope of use of stem cells was much narrower as a technology, Craig said it had been possible to gain some level of public support with a clearer approach to research such as work by the Warnock Commission to consider ethical and scientific implications.

"What could have been a massively controversial set of technologies was done in a way that informed by scientists, but had taken account of civil groups and led to negotiations of what is and isn't desirable," she said.

While not necessarily ruling on whether stem cell research should go ahead, Craig welcomed taking a similar approach to considering ethics, opportunities and potential difficulties ahead in the realms of data use.


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