Can our data be used for good? The ethics of research

Partners:

When governments around the world announced that they would be using tracking apps to monitor and control the spread of coronavirus, they highlighted the huge possibilities afforded by using our data – but also raised a number of ethical questions and challenges.

While many minds are focused on the pandemic, these questions are much broader, and increasing efforts to ‘join-up’ data across different parts of government – and make it available to researchers – mean these questions have become increasingly pressing today.

Indeed, collecting, analysing and using data has become the norm in the digital age. Previously obscure corners of public services may now find they sit on a treasure trove of information that could be used to improve policy and public services. For example, joining up information on children’s health and education can help us understand what additional support children with certain health conditions might need in school. Looking at employment data can help to better understand how to improve progression out of low-paid employment.

However, the central question is often about trust. Are there proper laws and safeguards, and can individuals trust governments, companies or public bodies to use this data safely and protect their privacy? The proposed central collection of patient GP data by NHS Digital for planning and research purposes has been dubbed by some as a ‘data grab’ aimed only at economic gain, while others argue that the secure use of this type of data is vital to improving diagnoses and treatments, as well as playing a key role in the longer-term pandemic response.

One way of promoting trust has been to demonstrate how the likelihood that individuals can be identified in the data made accessible to researchers is minimised. For example, data provided to researchers is usually de-identified by removing key information like names, or deliberately obscuring identifying information like precise locations. Such strategies can be very effective – but critics insist it is never possible to fully obscure the real person behind the data.

One other area of concern has been the relationship between governments and businesses. Should businesses like Google or Palantir be involved in analysing data for governments or public bodies, and should such activity be shielded from large, often unaccountable institutions? Conversely, should a company be able to enforce its privacy terms on elected governments, as Apple and Google effectively did when developing their own standards for Covid test-and-trace apps?

When there is such extensive scope to improve lives by making better use of data, what guiding ethical principles and data protections should be in place? Can governments be trusted to use this data for good, or do they deserve scrutiny? Are there useful differences between public bodies and companies, or between researchers and governments? Is ‘anonymous’ data ever truly safe from being re-identified, and if not, how can we balance risk with the benefits afforded by the digital revolution?