October 12, 2023

Ethical Perspectives on Data Usage in Research Infrastructures

Photo of panel discussants members. Photo: Maria Yohuang

On October 12th, NEAR and the Comparative Research Center Sweden (CORS) held a seminar entitled “Ethical Perspectives on Data Usage in Research Infrastructures”. The seminar aimed to understand the ethical aspects of using secondary data in research infrastructures. During the afternoon, around 100 participants attended, on-site or online, to listen to the seminar, which involved representatives from authority, research, infrastructure, juridical, and philosophical perspectives. 

Photo of Johan Modin and Björn Halleröd. Photo: Maria Yohuang

Björn Halleröd, Professor in Sociology at the University of Gothenburg and external Chair of the Steering Group of NEAR moderated the day. Johan Modin, Director of the Swedish Ethical Review Authority (SERA), presented perspectives from SERA’s point of view. Along with protecting research subjects, the authority’s primary purpose is safeguarding and upholding trust and confidence in research. Johan also informed about situations in which the Ethical Review Act (2003:460) applies and the requirements for approval, e.g., that all research must be conducted with respect for human dignity and research participants’ risks must always be counterbalanced by the scientific value of the research project.

Photo of Hugo Westerlund och Henrik Ekengren Oscarsson. Photo: Maria Yohuang

Hugo Westerlund, Professor of Epidemiology at Stockholm University (SU) and the Director of Relations, Work and Health across the life-course – a Research Data Infrastructure (REWHARD), and Henrik Ekengren Oscarsson, Professor of Political Science and Electoral Studies, University of Gothenburg (GU) and Director of the Swedish National Election Studies Program (SNES), presented perspectives from research and infrastructure perspectives. They talked about the importance of upholding research infrastructure for the highest possible use of data cost-efficiently, as well as enabling more high-quality and high-powered research. Infrastructures can also decrease survey weariness, enable better data control, improve generalizability, and retain and strengthen Sweden’s position in research. Suggestions for reforms to the Ethical Review Act are 1) appropriate legislation and ethical vetting for research databases/infrastructures; 2) a fast track for ethical vetting for specific research projects in terms of emergency; 3) a holistic perspective to the ethical approval process; 4) the possibility of applying for ethical approval for master thesis retrospectively. 

Photo of Lena Wahlberg. Photo: Maria Yohuang

Lena Wahlberg, Associate Professor of Jurisprudence, specializing in Medical Law, Lund University (LU), focused on ethical data usage from a juridical and theoretical perspective. The Ethical Review Act can be too comprehensive, and the relationship between the Act and the Swedish Principle of public access to information is complicated. Moreover, violations can lead to a tangled combination of consequences such as a fine or imprisonment for two years, withdrawal of publications, termination of employment, and fewer opportunities for future funding. There has been criticism of the Act, and an investigation is currently ongoing, appointed by the Government Offices. 

Photo of Torbjörn Tännsjö. Photo: Maria Yohuang

Torbjörn Tännsjö, Professor Emeritus of Practical Philosophy, presented the view on data usage from a philosophical perspective. He spoke about scenarios where medical samples were collected a long time ago and no informed consent was obtained for the use we currently want to make of them. This issue was discussed from the perspective of three moral theories: 1) Moral rights (Locke/Nozick); 2) Deontology (Immanuel Kant); and 3) Utilitarianism. According to the moral right principle, you have the right to consent to what you feel is right for you (even if it means your death), but no one can invade your property (your body) without your consent. Kant argues from the perspective of human dignity, that one should never treat a human being as a mere means. The final moral principle, utilitarianism, strives to maximize happiness. This is difficult to apply since we do not know what would happen if we acted in one way versus what would happen if we acted differently. How would most people react if they learned that we used their material without explicit consent? Torbjörn’s conjecture: “With complacency! People aren’t that concerned”. 

Photo of panel discussants members. Photo: Maria Yohuang

Following the presentations, the speakers from authority, academic, political, and juridical perspectives participated in a panel discussion for which they were joined by Lina Nordquist, Spokesperson for Health Care Policy, Liberalerna (L) and Associate Professor, Uppsala University (UU), as well as Mats Gustavsson, Data Protection Officer and Lawyer, Karolinska Institutet (KI). Among other things, a discussion on the need for legislation for infrastructures, not specific research projects took place. Overall, everyone agreed on the need for continued discussions and dialogue between all sectors on improving and developing ethical legislation on data usage in national infrastructures.