02/12/2021 Culture, Science, Education and Media
Over the past year, data collection and processing by using digital public health technologies have been promoted worldwide by governments as well as private companies to mitigate the pandemic, but the ethical and legal frameworks remain unclear to this day and a global debate has emerged around the risks associated with such tools.
“Data has become the oil of the digital era. But the ethical and legal frameworks remain unclear to this day and a global debate has emerged around the risks associated with track and trace applications. Thus, there might be a need for appropriate legislation and policies, including in education, to frame and control a privacy-friendly use of such digital tracking technologies”, said Duncan Baker (United Kingdom, EC/DA) opening a hearing today on ‘Track and trace applications: ethical, cultural, and educational challenges’, organised in Paris as part of the preparation of his report.
Pat Walshe, a data protection consultant on privacy matters in the United Kingdom, recalled that the European Convention of Human Rights protects “the right to establish and develop relationships with other human beings and the outside world, in addition to the separate right to the freedom of movement and association”. Accepting that public health emergencies such as the COVID pandemic may pose a serious threat to the health of the population and provide legitimate grounds for limiting certain rights and freedoms, “it is crucial that exceptions and restrictions on such rights and freedoms must be provided for by law, must be strictly necessary and proportionate for a specified and legitimate purpose, must be time limited, subject to review and evidence-based, and should only be applied when less severe measures are insufficient to safeguard public health threats”.
Elisabeth Ehrensperger, Director of the Swiss Technology Assessment (STA) Foundation in Bern, warned about the lack of transparency in tracking systems based on voice or facial recognition. “Who processes the data and where is it stored? To whom or to which organisations are they transmitted? How can we protect ourselves from it?”, she wondered. And mostly, “how far regulation is needed?” Among the challenges in the medium and long term, she said, are the increase in the imbalance of power between the individual and the State or the company, a further erosion of trust in the State or, in the context of health, more responsibility of the individual for their own health.
“One of the driving forces behind adoption and adherence to the Contact Tracing Applications (CTA) is performance expectation. So, are CTAs doing what they need to do?” said Wolfgang E. Ebbers, Professor at the Erasmus School of Social and Behavioural Sciences in Rotterdam. For this, he said, it is necessary to estimate its impact on health. “But data protection and privacy regulations make it difficult to estimate the impact on public health. Failure to estimate the impact hampers adoption and uptake, which hampers the impact on public health. How to break this vicious circle?”.
The Director of the Norwegian Board of Technology, Tore Tennøe, defined as a “false start” the Smittestopp application, launched by the Norwegian health authorities to collect and store sensitive data about users’ state of infection, location. The application was launched in April 2020, and voluntary downloaded by 1.2 million citizens. But following public and parliamentary debates the app was banned due to privacy concerns. “Science and technology are at the centre of the crisis, and urgent decisions with an uncertain evidence base had to be taken. So, how to include different perspectives, values and priorities?” he concluded.
When presenting to participants the work of the STA Foundation, Elisabeth Ehrensperger highlighted that track and trace application projects take into account the interests of the population concerned and, through participatory procedures, give the opportunity to citizens - as well as to stakeholders, specialists and politicians - to express themselves. “Because technology must serve people - not the other way around,” she underlined.