Integrating ELSA into CCBIO
CCBIO’s ELSA team is a dedicated research group on the ethical, legal and social aspects of cancer biomarkers. The group’s model is that of “integrated ELSA”, namely to build ELSA awareness and capacity throughout the CCBIO by interaction both in the scientific venues and the governance bodies of the center, including a dedicated PhD course.
Roger Strand is a trained natural scientist (cand. scient. (biochemistry, 1992) and dr. scient., (biochemistry, 1998), both degrees from the University of Bergen, Norway). Ever since his dissertational work, which combined biochemistry with philosophy of biochemistry, he has worked on issues of methodological underdetermination in science, scientific uncertainty and complexity. This has gradually led his research into broader strands of philosophy, ethics and social research and broader issues of policy, decision-making and governance at the science-society interface.
Strand’s group perform research on the ethical, legal and societal aspects (ELSA) of CCBIO research, distinguishing between two interrelated goals: (1) A better understanding of the developments, expectations and imaginaries of personalized/precision cancer medicine, including its political economy and ethical and social issues; (2) A better integration of this understanding into practices of “responsible cancer research” in the sense of RRI (Responsible Research and Innovation).
The ELSA group of CCBIO is a smallscale operation that can be seen as one project. They interact and are tightly linked, however, to similar ongoing ELSA and RRI projects funded by the Research Council of Norway’s (RCN) BIOTEK2021 program (NorZymeD, AquaFly, Res Publica) as well as Horizon 2020 (HEIRRI). They are furthermore developing a joint project on the opportunities and challenges of precision cancer medicine with a team of CCBIO ethicists, economists and biomedical researchers.
The group's type of research is not best described in terms of “discoveries” or factual “results”; rather, they are building insights and intellectual understanding (for their peers) and ELSA awareness (within the consortium and its partners and audiences). A central insight is that the quality of a biomarker – what makes a good biomarker, for whom? – is a complex issue with scientific and technical but also clinical, economic, ethical and political dimensions. A biomarker may be both well validated, informative and elegant from a scientific perspective and still fail because it does not make profit (or even threatens profit) or it is seen as destabilizing some patients’ right to a specific treatment. Perhaps an important result of the group's work is to open up the question “What is a good biomarker?” to include the social and political perspective, and ask if that perspective can be reverse-engineered into the search and design of biomarkers.
Plans for the future
The common denominator of the group's future plans is collaboration. They aim to collaborate more with CCBIO ethicists and economists and develop one interdisciplinary humanities and social science team to study the opportunities and challenges of precision cancer medicine. They wish to deepen the collaboration with CCBIO cancer researchers to promote the integration of our perspectives and RRI into practice. Furthermore, they continue their European and US collaborations on the more conceptual research into RRI and the coproduction of science, technology and society. Finally, as their research progresses, they plan to take a more active and visible stand vis-à-vis the Norwegian society and public sphere.
Current challenges in the field
Practical relevance is a challenge in this field. Research in this field, notable Science and Technology Studies, has produced thousands of pages of excellent empirical study and theoretical analysis of the challenges and opportunities of modern medicine and modern medical research. The latter 15 years we have been challenged also by policy to become relevant to practice and integrate our insights into the daily life of medical research – notably through policy concepts such as ELSA and RRI. Do we make a difference, and for the better? Can the difference be documented, monitored, promoted? Such questions are at the top of the EU research agenda in the field.
See Strand's publication list.