Roger Strand

The Ethical, Legal, and Societal Aspects (ELSA) Group.

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Portrait photo of Roger Strand on an artistic background.
Photo: CCBIO, Thor Brødreskift/Gaute Hatlem

About the research group

Roger Strand is professor at the Centre for the Study of the Sciences and the Humanities (UiB); dr. scient in biochemistry (1998); adjunct professor in responsible research and innovation, Centre for Digital Life Norway, NTNU; and co-director of the European Centre for Governance in Complexity.

Brief group presentation and history

This research group was formed with the purpose of creating an interdisciplinary environment within CCBIO to study ethical, legal and societal aspects (ELSA) of contemporary cancer research. With its home at the Centre for the Study of the Sciences and the Humanities (SVT) at the UiB, it originated from, co-existed and acted in synergy with the larger research group at SVT dedicated to responsible research and innovation and anchored in science and technology studies (STS) and philosophy of science. The group has had two main members throughout CCBIO’s existence (Anne Blanchard and PI Roger Strand) as well as two PhD candidates (Eirik Tranvåg and Karen Gissum, both in collaboration with other groups). In the second half of CCBIO’s 10-year period, the group was strengthened with Adjunct Professor Marta Bertolaso (Campus Biomedico, Rome). In addition, Ina H. Nygaard, Karoline Huse, Irmelin W. Nilsen and Mille S. Stenmarck have been assistant and/or student members of the group.

Research focus

Strand’s group has performed 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).

Subprojects

The ELSA group of CCBIO was a small-scale operation that can be seen as one project. They interacted and were tightly linked, however, to several similar RRI projects funded by Horizon 2020 (HEIRRI, TRANSFORM and SuperMoRRI) and the Research Council of Norway (AFINO, Res Publica and ARINA, as well as a number of biotechnology projects with similar ELSA/RRI work packages). They furthermore performed a joint program on the opportunities and challenges of precision cancer medicine with a team of CCBIO ethicists, economists, and biomedical researchers. A particular focus the latter years was the further development of the interdisciplinary research with Bjørge’s group, and specifically Karen Gissum’s PhD project that integrates dimensions from ELSA and hermeneutical health research into clinical research on ovarian cancer.

Translational, clinical, and societal importance

One of the group’s aims was to create a level of ELSA and RRI 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. Indeed, it has become an important part of the very identity of CCBIO to maintain considerable diversity, including a multi- and interdisciplinarity that reaches into the social sciences and the humanities. The focus on ELSA and RRI has been unique to CCBIO as a cancer research center, and has been implemented in other CCBIO activities, such as in a PhD level course, the CCBIO Annual Symposium and in other scientific meetings. Hence, one profound societal impact of CCBIO is the creation of a new generation of scientists with a broad, interdisciplinary outlook that readily combine multivariate molecular information with clinical perspectives, and with economic, ethical, sociological, and philosophical perspectives. This was achieved through the continuous efforts of the ELSA group.

Future perspectives from 2024

The ELSA group of CCBIO has largely achieved its goals. They are in the phase of translating their work in CCBIO into contributions to the wider field of RRI and governance of science, in a set of publications in 2024/2025. It is also important for the group to take part in the overall endeavor for CCBIO to summarize, analyze, and synthesize the accumulated scientific progress that CCBIO has led to over its 10 years of existence.

Results from the CoE period 2013-2024

Most important results

Strand’s group builds insights and intellectual understanding (for peers) and ELSA/RRI awareness, within the consortium and its partners and audiences. The highlight of the group’s achievements was the publication of their interdisciplinary research anthology “Precision Oncology and Cancer Biomarkers: Issues at Stake and Matters of Concern”, edited by Anne Blanchard and Roger Strand and with 17 contributors from the CCBIO ELSA network. The key focus of the publication is the interdisciplinary analysis of the sociotechnical imaginaries of personalized and precision cancer medicine. In general, it can be said that the book elaborated a set of re-framings of cancer, drawing on complexity theory, medical philosophy, Daoist philosophy, science and technology studies, postnormal science, and health technology assessment. In this way, the group documented and analyzed ethical and epistemological shortcomings of dominant imaginaries of precision cancer medicine, notably how they rely on overly reductionist understandings of illness and disease and accordingly result in unrealistic promises. By June 2024, the open access e-book version had registered >35k downloads.

Most important papers
  1. Blanchard & R. Strand (eds) (2017). Cancer Biomarkers: Ethics, Economy and Society. Megaloceros Press, 148p. https://doi.org/10.24994/2018/b.biomarkers
  2. Bremer & R. Strand (eds) (2022). Precision Oncology and Cancer Biomarkers. Issues at Stake and Matters of Concern. Springer, 281p. https://doi.org/10.1007/978-3-030-92612-0
  3. T. Völker, R. Slaattelid & R. Strand (2023). Translations of Responsibility. Routledge, 242p. https://doi. org/10.4324/9781003371229
  4. MS. Stenmarck, C. Engen & R. Strand (2021). Reframing cancer: challenging the discourse on cancer and cancer drugs — a Norwegian perspective. BMC Med Ethics 22, 126. https://doi.org/10.1186/s12910-021-00693-5
  5. Blanchard (2016). Mapping ethical and social aspects of cancer biomarkers. New Biotechnology, 33(6), 763–772. https://doi.org/10.1016/j.nbt.2016.06.1458
Other important outputs and achievements

One important output from the group has been organizing the PhD level course CCBIO903, Cancer research: Ethical, economic and social aspects. This course has focused on ethical, economical and societal aspects of cancer and cancer research and has given the PhD candidates the tools for systematic reflection on their own and related research as well as methods for assessing the cost benefit of health measures and methods of treatment. The course has focused on aspects such as how to assess the costeffectiveness of cancer biomarkers, how to make medical decisions when surrounded by risks, uncertainties and even ignorance, what the ”good life” can actually mean, and what the future may hold for cancer research. Since the first course in 2015, CCBIO903 has given the young MDs and PhDs a theoretical platform for the difficult decisions they would need to make in their future.

CCBIO significance

"Our ELSA research activities on cancer biomarker research and imaginaries of personalized and precision cancer medicine would not have existed without CCBIO. CCBIO has provided both the occasion, substrate, intellectual environment and funding for this research."

Other results from Team IV in the CoE period 2013–2024

Team IV in CCBIO, Ethics, Economics and Priorities, aimed to perform studies on the ethics, economics, philosophy and priority challenges in the biomarker field, to contribute to improved education of CCBIO scientists in this dimension of their work including increased self-reflection, and ultimately to influence the public debate and policy making in the expanding area of biomarkers and precision treatment. This team consisted of PIs John Cairns, Ole Frithjof Norheim and Roger Strand (chair of this team).

Group photo of the 3 researchers, with an artistic background.
Team IV from the left: Ole Frithjof Norheim, John Cairns, and Roger Strand. Photo: CCBIO, Thor Brødreskift/Gaute Hatlem

Roger Strand is still running this program, whereas Cairns and Norheim are since 2025 continued on to other challenges. The work from their groups remains an important part of the CCBIO legacy.

John Cairns

In the Cairns group, health economics research within CCBIO has focused on the economic evaluation of oncology drugs. Particular attention has been paid to the evaluation methods used and the contribution of different types of data (such as health outcomes recorded in clinical trials and real-world data). The most important project in recent years has been on improving economic evaluation and decisionmaking for oncology drugs using real-world data. This has involved a detailed analysis of two hundred and twentynine appraisals undertaken 2011–2021 in the UK. 

Another project has focused on how molecular targeted therapies and immune checkpoint inhibitors for the treatment of non-small cell lung cancer have been assessed. Managed Access Agreements are being used increasingly in the UK as a means of improving access to treatments where the evidence of clinical effectiveness is too uncertain for the National Institute of Health and Care Excellence (NICE) to recommend routine commissioning. The Cancer Drugs Fund [CDF] was introduced in England in 2016 to give patients access to these potentially valuable treatments. The CDF provides the drugs for several years while additional data are collected before a final review of the drug takes place. An analysis by the Cairns group of the first twenty-four drugs to exit the CDF highlighted the important role played by longer follow-up of patients in the original clinical trials used to support the introduction of these drugs and the very limited role played by the data collected from patients receiving the drugs provided through the CDF. This is an important finding given the widespread enthusiasm for using real-world data to inform drug reimbursement decisions. Clear differences were observed between the appraisal of checkpoint inhibitors and that of molecular targeted therapies, at least in the context of non-small cell cancers. These differences derive from the more limited clinical data and the more restricted application of targeted medicines. In 2022, results were reported on the use of real-world data in access agreements appraisals of targeted cancer therapy (UK) (Kang et al., Pharmacoeconomics Open 2022; Kang et al., BMC Cancer 2022; Kang, Cairns, BMJ Open 2024). Notably, Jiyeon Kang successfully completed her CCBIO funded PhD thesis in 2023 at LSHTM.

Most important papers
  1. Seo MK, Cairns J. How are we evaluating the costeffectiveness of companion biomarkers for targeted cancer therapies? A systematic review. BMC Cancer 2021. PMID: 34470603.
  2. D′Avó Luis AB, Seo MK. Has the development of cancer biomarkers to guide treatment improved health outcomes? European Journal of Health Economics 2021. PMID: 33783662.
  3. Cairns, JA. Assessing the Cost-Effectiveness of Molecular Targeted Therapies and Immune Checkpoint Inhibitors. In: Bremer, A., Strand, R. (eds) Precision Oncology and Cancer Biomarkers. Human Perspectives in Health Sciences and Technology, vol 5. Springer, Cham, 2022. doi.
    org/10.1007/978-3-030-92612-0_11
  4. Kang J, Cairns J. “Don’t Think Twice, It’s All Right”: Using Additional Data to Reduce Uncertainty Regarding Oncologic Drugs Provided Through Managed Access Agreements in England. Pharmacoeconomics — Open 2023. PMID: 36123583.
  5. Kang J, Cairns J. Cross-sectional analysis of use of realworld data in single technology appraisals of oncologic medicine by the National Institute for Health and Care Excellence in 2011–2021. BMJ Open 2024. PMID: 38485485

Ole Frithjof Norheim

In the Norheim group, the main aim has been to explore how biomarkers inform and potentially improve fairness in health care priority setting. Eirik Joakim Tranvåg’s PhD thesis Precision and Uncertainty (2021) has been an important delivery. Findings in a conjoint analysis based on a survey of Norwegian medical oncologists suggest that biomarkers may be seen as relevant in clinical priority setting decisions for new and expensive cancer drugs. Results from an analysis of Norwegian drug appraisals also suggest that biomarkers are actively used and help facilitate drug coverage decisions at a national level. Despite this, Tranvåg argues in his thesis that priority setting actors still need to acknowledge that the increasing uncertainty in personalized medicine may lead to more difficult priority setting decisions. This cannot be dealt with only by developing better and more valid biomarkers, but also requires interaction between science and society, coproduction of knowledge and a fair priority setting process. Key publications from Norheim’s group were Tranvåg’s PhD thesis Precision and Uncertainty: Cancer biomarkers and new perspectives on fairness in priority setting, and the third and final paper in the thesis, Appraising Drugs Based on Cost-effectiveness and Severity of Disease in Norwegian Drug Coverage Decisions (published in JAMA Network Open, June 2022). The findings from this paper must be seen as a major result from the group, as it was highly relevant for the public debate about drug reimbursement in Norway. The group contributed to both of CCBIO’s anthologies on the ethical, legal and societal aspects of cancer biomarkers, the last issue being Precision Oncology and Cancer Biomarkers, Issues at Stake and Matters of Concern (editors Anne Bremer and Roger Strand, Springer 2022). 

During 2019–2022, the Global Health Priorities Research Group directed by Ole Frithjof Norheim has grown and developed into a center — the Bergen Centre for Ethics and Priority Setting (BCEPS), with funding from the Bill & Melinda Gates Foundation among others. Notably, in 2022, Norheim was awarded a Centre of Excellence (SFF-V) from the Research Council of Norway, opened in January 2024.

Most important papers
  1. Tranvåg EJ et al. Appraising Drugs Based on Costeffectiveness and Severity of Disease in Norwegian Drug Coverage Decisions. JAMA Netw Open 2022. PMID: 35767256.
  2. Tranvåg EJ et al. Rationing of Personalised Cancer Drugs: Rethinking the Co-production of Evidence and Priority Setting Practices. In A. Bremer, R. Strand (eds.), Precision Oncology and Cancer Biomarkers, Human Perspectives in Health Sciences and Technology 5, https://doi.org/10.1007/978-3-030-92612-0_14. (external link)
  3. Tranvåg EJ et al. Precision medicine and the principle of equal treatment: a conjoint analysis. BMC Med Ethics 2021. PMID: 33971875.
  4. Tranvåg EJ et al. Clinical decision making in cancer care: a review of current and future roles of patient age. BMC Cancer 2018. PMID: 29743048.
  5. Hernæs UJV et al. Distribution-Weighted Cost-Effectiveness Analysis Using Lifetime Health Loss. Pharmacoeconomics. 2017. PMID: 28625004.
Last updated: 26.06.2025