“‘Patient Involvement’ and data protection in medicine and medical research and related Ethical, Legal and Social Issues (ELSI)”

The online event opened with a greeting by Dr. Ingrid Krüßmann, Director of DFG Office Japan since 2019. Dr. Krüßmann is also Deputy Head of the International Affairs Division of the DFG as well as German Director of the Sino-German Center for Research Promotion in Beijing. In 2009 she coordinated the planning of the DFG Office Japan. Based on her experience, Dr. Krüßmann emphasised the importance of sound partnership with the funding agencies in Japan – the Japan Society for the Promotion of Science (JSPS), the Japan Science and Technology Agency (JST), and the Japan Agency for Medical Research and Development (AMED).
The topic of the conference was introduced by the MC, Prof. Dr. Ralf Stoecker, Professor for Practical Philosophy at Bielefeld University. As Professor Stoecker has collaborated with colleagues at Sophia University, Hitotsubashi University and the University of Toyama on the topic of human dignity – “songen” in Japanese – his work has links to Japan as well. In her welcome remarks, DFG Secretary General Dr. Heide Ahrens introduced the Heinz Maier-Leibnitz-Prize and prize-winner Dr. Fruzsina Molnár-Gábor. Dr. Ahrens highlighted the combination of academic excellence, international openness and variety of perspectives which characterised not only Dr. Molnár-Gábor’s cooperation with Prof. Dr. Kazuto Kato at Osaka University in Japan but also the online conference itself.

Professor Kato is currently specialising in research areas such as biomedical ethics, science communication and public policy in the life sciences, but beyond his research activities he is also involved in various national and international projects and academic societies such as the Ethics Committee of Human Genome Organization, and the WHO’s Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing. In their talks on “Public interest in genomic medicine” and “Dynamic changes in the governance of medical and genomics research – towards more inclusive and equitable approach”, Dr. Molnár-Gábor and Professor Kato laid the foundations for in-depth, critical discussion of the “Changing landscape of medicine – Genomic technology and patient involvement.”

In the panel discussion, Dr. Solveig Lena Hansen, Lecturer in Ethics at the Faculty for Human and Health Sciences at Bremen University, discussed ethical aspects and posed the question: “Why do we need Patient Involvement”. Dr. Hansen previously conducted research within the DFG funded project “’I would prefer not to’. Organ donation between unease and criticism. A sociological and ethical analysis.” Ms. Haluna Kawashima, Project Associate Professor at the Keio Global Research Institute (KGRI) in Tokyo, commented on the two talks from a legal perspective based on her research background in the field of platform regulation in terms of democracy, personal liberty, social protection and state sovereignty.

From the perspective of the social sciences, Prof. Dr. Kaori Sasaki of Sapporo Medical University pointed out three aspects that play a crucial role when storing digital patient data: public interest, equity and participation matters and consent. Professor Sasaki’s research involves an international comparison of the opportunities for participation among marginalised groups such as those without health insurance. Finally, Prof. Dr. Soichi Ogishima of Tohoku University in Sendai elaborated on data issues based on his work at the Tohoku Medical Megabank Organization, which has a genomic data pool of 140,000 data donors. As he sees it, reciprocity and diversity are important for international cooperation. However, a key aspect for the Tohoku Medical Megabank Organization is public interest, because besides being a place of data storage, the Megabank above all has a responsibility to build trust.

In the subsequent open and multidisciplinary discussion, MC Professor Stoecker linked the diverse approaches of all the speakers and raised questions for the subsequent group discussions in the break-out session. The discussions were channelled and intensified in three groups focusing on the subject areas Legal/Data Issues, Bioethics/Ethical Issues, and Legal/Social Issues.

This bilateral online conference showed that when it comes to questions regarding scientific approaches in the area of patient involvement such as how to integrate patients in the planning of research projects as well as more philosophical questions on the role of trust, the debate greatly benefits from international comparison and multiple angles. Furthermore, it became clear that there is much potential for cooperation and further exchange on ELSI issues, specifically in the area of bioethics and ethic in medicine.

This first DFG-Heinz Maier-Leibnitz Prize online conference revealed opportunities for multidisciplinary and international approaches to intensify debate on unresolved questions, drawing on the multiple perspectives of the different research areas.

A video of the talks and panel discussion of the online conference is available on DWIH Tokyo’s YouTube channel (the break-out session with group discussions has not been archived).