Finding SPACE for research in a pandemic

By Richard Milne and Alessia Costa

April 2022

We live in a world surrounded by data. Devices from smartphones to sequencing machines are constantly generating data about us, ranging from our activity levels to the DNA code of our genomes. This data is collected, used, and shared by individuals, companies, public services, and governments. Our data saturated world has the potential to have a positive impact on medicine, and the detection and treatment of a wide range of health conditions. But data-driven medicine also brings with it a number of social and ethical challenges.

The SPACE (Stakeholder Perspectives on ethical challenges in the use of Artificial intelligence for Cognitive Evaluation) study focuses on new and emerging approaches to using digital data and Artificial Intelligence (AI) to detect the early signs of cognitive decline associated with Alzheimer’s disease and dementia. For instance data on changes in gait and movement from an exercise tracking device, may be an indicator that prompts further investigation. The SPACE study aims to understand how stakeholders, including researchers and technology users, negotiate, conceptualise and address ethical questions in practice.

Beginning in 2019, the study has involved a mapping exercise of relevant digital tools, research initiatives and companies operating in this area; interviews with 26 experts and researchers in academia and the private sector; repeated interviews with 30 older people in the UK and Italy who are target users of the technology; and observations of workshops, conferences and seminars. Whereas the initial plan was to carry out in-person observations of researchers’ work, to understand how they come to understand certain issues as being relevant to ‘ethics’, by 2020 this had switched to virtual observations.

Our initial findings from the SPACE study have identified key ethical areas that stakeholders associate with this research. These include the communication of risk and/or a dementia diagnosis; privacy and transparency; the representativeness of the data that is generated; and the implications for justice, access, and bias. Interestingly, we found that researchers’ perception of these issues is informed by the scope and nature of existing debates on ethical issues in Alzheimer’s clinical research, particularly around the ethics of disclosure of disease risk in the absence of a disease-modifying treatment. This is such a dominating concern, that other issues specifically associated with ‘Big Data’ and AI, such as privacy and data ethics, can be difficult to articulate and grapple with, despite their recognised significance and importance.

Our ethnographic work on older people’s views and experiences of using digital technologies to monitor their health was also significantly affected by the pandemic. We had planned to conduct home visits to ask older people to show us how technology is part of their daily life, for example, what devices they have at home, and how they use them. But as the pandemic progressed we redesigned our approach to embrace some of the opportunities we were presented with to explore people’s relationship with digital technologies.

Firstly, as our daily routines changed significantly during lockdown, so did our relationship with technology. Most of us became more reliant on technologies to stay in touch with loved ones, socialise, or conduct daily activities that were precluded or limited by Covid-19 regulations. Secondly, technologies came to play an important role in healthcare delivery, with many medical appointments moved online. And finally, technological innovations were widely relied upon in the fight against the pandemic, from genomic surveillance to symptom tracking apps and digital contact tracing.

Ethical and social challenges related to the use of technologies were therefore brought to the forefront of public debate, offering us the opportunity to explore questions which might have otherwise remained distant from people’s daily experiences. We changed our protocol to conduct repeated phone interviews to discuss people’s changing relationship with digital technologies during the pandemic. We focused in particular on Covid-19 contact tracing apps to explore people’s attitudes towards using digital tools to monitor their health, including issues of privacy and transparency, and the value to individuals and society. We built on these experiences to investigate people’s views of possible future uses of the technologies to track and assess non-communicable diseases associated with aging, such as Alzheimer’s.

Beyond the aims of the SPACE study, the pandemic has placed a spotlight on how issues of privacy, fairness and justice in relation to personal data and data sharing (for example in the context of vaccine passports), can unexpectedly impact all our lives. At the same time, the need to balance restrictions on individual freedoms with the need to protect the most vulnerable members of society, and the implications of these decisions for our shared health resources, have raised questions around the fair distributions of benefits, burden, and risk. From this perspective, the pandemic has contributed to create public awareness on themes that are central to the debate on the ethics of genomics, and which have so far remained largely confined to scholarly debates.

Note: The SPACE study was led by Dr Richard Milne and Dr Alessia Costa at Wellcome Connecting Science. Article first published on the Wellcome Connecting Science website, March 2022.