The public sector and the ethical sharing of data
THE development of Covid19 status, check-in and vaccine apps saw us generate more health data than ever before, but this was accompanied by concern over privacy and potential misuse of data. These experiences with Covid show just how important transparency and clarity on how information is used are for ensuring public trust, and why our work is so vital to building trust and confidence of the public, and regulators.
The public might tolerate use of their personal data during an emergency but, once the pandemic is over, will they be as willing to allow access to sensitive data, especially by private companies? I chair a new Independent Expert Group (IEG) advising the Scottish Government about how the public sector can make decisions about sharing the datasets they hold in a way which benefits the people of Scotland and retains our trust.
Governments hold lots of personal data about us as citizens and receive requests from companies, charities, and the public for access to this data for different purposes. The underlying reasons might be political, commercial, or personal, but agencies must always consider transparency and privacy when evaluating these requests
Companies may claim access to data will lead to better services and products, but public bodies are often (rightly) anxious about whether providing access would be lawful. Data protection law sets out standards, principles, and obligations for handling personal data but there are additional ethical considerations when providing access to, for example, data held by the NHS or university researchers.
Our IEG has been established to address this anxiety and to provide guidance that empowers the public sector to make the right decisions about our data.
AS part of our work, we will seek to define public benefit when private companies are seeking to make a profit. Even if public benefit can be demonstrated, the public may still not be happy about handing over data to big tech firms which have acted unethically in the past and are extremely powerful in the present.
We will also look at how public sector bodies can evaluate requests for so that data is only released as a public good. This means assessing what has happened already in Scotland and the situation elsewhere in the world.
Ensuring the public can participate in decision-making is key to ensuring that data sharing is legitimate in all senses, with recent reports suggesting that giving people a say is key to ensuring public acceptance of new technologies and data uses. Involving people in the design, development and deployment of data governance frameworks may be a mechanism for helping to ensure public benefit is realised while preserving trust in the use of our data.
Governments around the world are grappling with these issues, and we know that many are watching developments here closely. We hope that this programme of work in Scotland will be world-leading, and an exemplar of ethical data sharing.