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 performs research on the ethical, legal and societal aspects (ELSA) of CCBIO’s 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 the similar ongoing RRI projects (NFR Res Publica and AFINO, and Horizon 2020 SuperMoRRI and TRANSFORM). They are furthermore performing a joint program on the opportunities and challenges of precision cancer medicine with a team of CCBIO ethicists, economists and biomedical researchers.
Strand’s group builds insights and intellectual understanding (for peers) and ELSA awareness, within the consortium and its partners and audiences. A central insight is that the quality of a biomarker is a complex issue with scientific and technical but also clinical, economic, ethical and political dimensions. A biomarker may be 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 is to open up the question “What is a good biomarker?” to include the social and political perspective, asking whether that perspective can be reverse engineered into the search and design of biomarkers.
Plans for the future
The main short-term plan is to publish a synthesis of the insights from the group’s collaborations within team IV (with CCBIO ethicists Norheim and Tranvåg, and economists Cairns and Kang) and from collaborations with the other CCBIO teams (Wik, Akslen, Dillekås, Engen, Gissum and others). Specifically, the Strand group is working on a book project that follows up on their 2017 volume “Cancer Biomarkers: Ethics, Economics and Society”.
CCBIO has entered its second 5-year period. Before 2023, the group’s challenge is to create a level of ELSA awareness in CCBIO as such, and to have made a difference on how cancer biomarker research is and will be performed at the University of Bergen. In this work, they will search for synergy with the Centre for Digital Life Norway, which has a strong RRI profile and of which CCBIO is an associated partner, and with international collaborations. CCBIO can in many ways be seen as “best practice” for RRI. It is important for the Strand group to translate their work in CCBIO into contributions to the wider field of RRI and governance of science.
Current challenges in the field
There is the challenge of practical relevance. Research in the field of Science and Technology Studies has produced thousands of pages of excellent empirical studies and theoretical analyses of the challenges and opportunities of modern medicine and modern medical research. During the latter 15 years, we have also been challenged 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.
See Strand's publication list.