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Webinar - Beyond the exit strategy: ethical uses of data-driven technology in the fight against COVID-19

Held jointly with the Ada Lovelace Institute

Held Friday 17 April 2020

In their first joint webinar, with 492 participants from 39 countries, the Nuffield Council on Bioethics and Ada Lovelace Institute brought together international expertise to discuss how we can achieve the ethical use of data-driven technologies to combat COVID-19.

The webinar was chaired by Hugh Whittall, Director of the Nuffield Council on Bioethics, and Carly Kind, Director of the Ada Lovelace Institute.

Hugh framed the initial pressing questions being raised in the UK currently: How do we move from lockdown to something closer to normal life? What kind of data-driven technologies might assist in moving towards that, and what ethical issues might there be around them?

Carly shared findings from upcoming Ada Lovelace Institute research ‘Exit through the App Store’: We know that many governments around the world are considering how they might be able to use technology to better understand the spread of coronavirus, to stop that spread and to rebuild the capacity of health systems, and our societies more generally, as we move out of the strictest lockdown measures. The Ada Lovelace Institute has been working on a rapid evidence review: convening a group of 20 or so experts and looking at the technical considerations and societal implications of using data-driven technologies as part of this transition.

There are three most prominent technologies under consideration that will be repeated themes in the conversation:

  • Digital contact tracing applications
  • Symptom tracking applications
  • Immunity certification and, in particular, digital immunity certification technologies

Presentations

Linnet Taylor is an Associate Professor at Tilburg Institute for Law, Technology and Society, Tilburg University, Netherlands working on global data justice.

We are in a situation today where there is a lot of policy-based evidence emerging, rather than evidence-based policy. This is because we are working in a state of profound uncertainty, with very thin knowledge of the accuracy of the data we have to work with. Scientists are broadly being balanced and clear in communicating these limitations and uncertainties, but when this is translated into policy it appears to be resulting in radical differences between different countries and regions.

Cultural differences around the world are going to create different types of evidence that governments are going to have to weigh. For instance, we’re seeing already a radical difference in how effective face masks are considered as an intervention internationally. There is some kind of underlying truth about whether we should be using face masks and their efficacy, but we don’t know what it is right now. Nonetheless, it’s affecting policy. This is similarly the case in practices of technical tooling and surveillance and the varying pace of its adoption. Therefore when we consider data analytics and data-driven technologies – whether immunity certificates or contact tracing – this kind of discourse and analysis around ethics, civil and political rights is hugely important.

The global pandemic is not a singular problem that can be solved, but a state of the world which needs to be addressed in a continuing way. This means we are talking about governance - governance of an ongoing pandemic and our response to it. If we want this governance to operate through technology, we have to be aware of the existing limitations of democratic accountability in technology. We want to avoid a hackathon approach to technologies that deal with our health and our civil and political liberties, particularly in the context of information uncertainty.

If we are to have government through technology, it must be accountable. To do that we need:

  1. Honesty about the gaps in the data, in an ongoing way: being clear on what we don’t know and having transparency about mechanisms for ensuring systems aren’t being built on inaccurate data, and can adapt as our understanding of the data and its accuracy may change.
  2. Guarding against function creep: we need to ensure our actions are relevant to the current state of affairs in terms of public health and safety during COVID-19, and update to match as this changes over time to prevent unnecessary ongoing measures or security theatre.
  3. Structured protections against irresponsible technology that go beyond GDPR and personal data, and see checks and balances via a meaningful role for civil society organisations in protecting privacy and critical civil rights, as well as ensuring representation and diversity, globally, of those involved in the design and development of the technology.
  4. Balance between centralisation and decentralisation: a key tension is that good privacy technology is decentralised, whilst good government sees centralised information that enables judicious action; we will need skills and organisations to broker these perspectives.
  5. No tech solution should be seen as a political solution: we will remain in a state of vulnerability and the idea that tech can truly and wholly protect us, is something more dangerous than bad politics or bad government.


Ruipeng Lei is Professor of Bioethics at the School of the Humanities and Centre for Bioethics, Huazhong University of Science and Technology, Wuhan, China.

The health code system in China

On 6 February 2020 the leader of Hangzhou city, in Zhejiang province, proposed that, in order to restart work and enterprises, they should play to the advantages of the digital economy and establish a unified digital declaration platform, for data sharing and the creation of personal health codes. Soon after this intervention, CCTV news reported on a collaboration between Alibaba and local government for the Zhejiang health code product – a new type of public-private cooperation. Other local provinces quickly sought to replicate it.

The health code system in China requires users to declare information including their name, fax, mobile phone number, ID number, email address, activity tracking, health information and contact history. In addition to this information recorded by users, the health code system is also connected with national civil aviation, railway and highway data, as well as local bus and subway data. Telecoms, payment and banking data is also available to the system. This combined data is then used for real-time comparison and analysis of data to cross-verify user-declared data and accurately map the movement trajectory of citizens and identify high-risk groups.

From this, the health codes are generated giving different colours. In Wuhan they have three code colours: green indicating ability to travel freely, yellow requiring self-quarantine for one week and red requiring self-quarantine for two. However, the health code system is not unified across the country, and so this will work differently in different areas. Some provinces allow a one-day health code green pass following a temperature check, for instance.

There is a legal basis for this health code system in China. Regulations on prevention and control of infectious diseases and the regulations on health emergencies stipulate that in the process of epidemic prevention control, the government and health institutions have the power to collect personal information for the purpose of epidemic prevention and control. Individuals have the obligation to report personal information such as ID card, address, health status and contact history. Relevant departments and agencies have the legal basis to change the purpose of information use.

We appear to see success, not just in China, but in East and Southeast Asia, with these kinds of mobile apps combined with intensive testing programs. Standard testing and contact tracing have challenges in a context where an estimated 50% of all disease transmission is happening during early infection stages and before symptoms start. These emerging and data-driven technologies have merits.

Ethical considerations

There are ethical issues to consider with these technologies. Informed consent and privacy are serious concerns of the Chinese people. According to a survey of 16 health codes, covering 14 provinces and cities, when applying for a health code there no user service or privacy agreement with the app. However, in the national health code platform the applicant is required to consent to the user service agreement and privacy policy. This specifies what data will be collected, that it will only be used for recording users health information for epidemic prevention, and declares it will protect personal information and not permit the use of the information in the health code app to invade privacy.

However, it has also been stated that the Shanghai health code system will be used to provide data services for work, life and business. Alipay have said the health code will be formally associated with electronic social security cards and health cards, and can be used for hospital and insurance payments. This raises concerns about the invasion of privacy.

There is major potential benefit to society through enabling normal life to resume safely, and socially responsibly. But there is also scope for improvement in these technologies to implement informed consent and protect privacy. In China it is considered that everybody has a right to be protected and treated when being infected and, in turn, also has the obligation to protect others, including providing your health, and other related information to the agency for preventing and controlling the epidemic.

Now the challenge is how to improve the health code systems and achieve a balance between personal interest and societal good. The state should accelerate the formulation and implementation of technical standards to unify and standardise data collection, strengthen scrutiny of data management, prevent data leakage and publicise relevant documentation in a timely manner. Each health code operation institution should improve the user agreement and privacy policy to guarantee the rights of users to be informed about their data use, avoid data abuse. This is an urgent task in China, because the technologies are now widely in use. After the epidemic is over, data deletion should be established. If it is really necessary to continue using relevant data, the purpose of that use should be clearly defined and the citizen’s authorisation should be obtained.

Questions

Participants submitted 85 questions for the panel. We didn’t get to all of them, but share some key highlights:

Is one of the real risks that the governance systems may not be able to avoid function creep and the continued use of emergency data and infrastructure going forward?

There are provisions for deleting personal data when no longer necessary within GDPR. However, in addition to concern about infractions, there is also no provision for anonymised data. Technically, that can be kept forever. Even though, as aggregated data, it may say things about groups, neighbourhoods, a particular ethnicity, country, gender, poverty status or activities. This is something to be cautious about.

Chinese smartphone penetration is at around 50%. How do these systems deal with those who don’t own or use smartphones? What do we know about its effectiveness?

At this stage we’re very early, and so there has not been the opportunity for thorough investigations. The variation of health code systems by city/province allows for some customisation to that region’s needs. There is a non-electronic alternative: a local paper certificate with an official stamp, that relies on daily community reporting systems. The level of community infrastructure in China is different from many other nations – for instance, whilst there are residential community health reporting systems in place, there is also often ones within universities or other communities, offering many ways to interact beyond the mobile apps.

How can we build public trust in the technologies, in the government’s use of data, in health data use?

Trust doesn’t come without trustworthiness. We’re asking tech to be part of government, and we’re asking government to make decisions about tech on our behalf in a way that hasn’t happened in recent history. We should therefore be looking to apply governmental accountability to the tech sector: tech that’s part of government and governance needs to be under democratic control. The Ada Lovelace Institute report is a great starting point on this thinking.

If an immense amount of value is created through data collection, it could become private value or public value. How do we ensure it’s the one we want?

There is not a single answer to any of these questions – they are contextual. We need meaningful structures for scrutiny of decision making around these problems. We need new governmental infrastructure to establish the new forms and levels of scrutiny, including links to civil society that don’t currently exist, to tackle these questions and ensure that they are, in fact, the right questions.

Commercial use of this personal data is also a concern in China. The national platform, Alipay and WeChat all use the health code system – it’s a new kind of public-private cooperation. We should take into account how to protect personal data and privacy from future commercial use. Whilst some dilemmas and difficulties might be overcome by technology itself, we cannot rely on technical fixes to social problems and must be alert to them. We need transdisciplinary experts to establish the accountability mechanisms for oversight of the use of these technologies.

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