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 Chair of the external 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. Research ethical tools are informed consent, assessment of risk vs. benefits, and choice of research subjects. Johan also informed about situations in which the Ethical Review Act (2003:460) applies and the requirements for approval. For example, 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. Research requires ethical permission and can only be obtained for specific research projects. Infrastructures are not predefined projects. This can be problematic in light of scientific discovery, academic freedom, and innovation. 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. Moreover, a legal and administrative framework for ethical vetting of research databases is needed and there should be a clear framework for safeguarding sensitive data. 

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. She presented the Ethical Review Act (2003:460)

• The act protects individuals and respects human dignity in research.

Requires an ethical review of research that:

• Includes the handling of sensitive personal data or personal data regarding crimes
• Involves the physical intervention of a living or deceased person
• Use a method that aims to affect or create an apparent risk of injuring the research subject physically or mentally.
• Relates to the study of biological material that can be traced to a living or deceased person.

In some respects, the Act is too inclusive, 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. At the same time, some research of potential ethical concern falls beyond the act’s scope, including research that seems relevant vis-à-vis the act’s aim to protect respect for human dignity. Simply put, human dignity means that everyone has intrinsic value as a member of the human species. Human dignity can be violated in various ways, e.g., by treating a person as an object/commodity, verbally humiliating someone, changing the nature of the human species, or not respecting a person’s autonomy.

Photo of Torbjörn Tännsjö. Photo: Maria Yohuang

Torbjörn Tännsjö, Professor Emeritus of Practical Philosophy, presented his view on data usage from a philosophical perspective. He spoke about scenarios where medical samples were collected a long time ago. 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. The moral right principle relates to owning yourself morally, and you have an absolute right to integrity. 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.