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The Ethics of Personalised medicine

The Carlsberg Foundation's 'Semper Ardens' Research Project

How does personalised medicine bring digital and corporeal manifestations of the individual person — the “me” — into the world? Which groups and collectives — which “we”s — are at the centre of personalised medicine? In her Semper Ardens project, MeInWe, Professor Mette Nordahl Svendsen investigates the intertwining of person and the collective in personalised medicine.

By Dr. Mette Nordahl Svendsen, Professor in Medical Anthropology at the Department of Public Health, University of Copenhagen

The me in the we

Personalised medicine is an expanding field of strategies for tailoring diagnosis, treatment, and prevention to the individual.

“The state will steal your DNA” and “Critique: DNA project is high risk” are but two catchy headlines in Danish newspapers in 2017 and 2018. 

The background for the discussion was the Danish government’s projection of a National Genome Centre as part of implementing personalised medicine in Danish health care. 

The use of the concept of “stealing” and the articulation of this project as “high risk” point to the discussion’s central issue: how to treat and administer genomes as simultaneously part of the “me” of the person and the “we” of the Danish welfare state.

Figure 1: The “me” and the “we” are always intertwined. Image by Jahn Henne

The Semper Ardens grant I received from the Carlsberg Foundation has made it possible for my team and myself to investigate the ethical, legal and organizational challenges of personalised medicine in Denmark.

Translation between medicine and society

That advances in genomics raise ethical questions is not new. Many important studies have been carried out highlighting how personalised medicine challenges patient autonomy, the right to self-determination, and protection of privacy. These studies have a strong focus on the individual. 

What makes MeInWe unique is the way it addresses the individual as part of social arrangements that shape and are being shaped by personalised medicine. What also makes MeInWe stand out on an international stage is the size of the project, its interdisciplinarity, and its specific research questions. 

MeInWe includes more than ten researchers from the fields of humanity, social science, and law, thus making it possible for researchers with different disciplinary backgrounds to do empirical research together and pursue critical and surprising insights at the intersection of different disciplines and different empirical sites.

Figure 2: MeInWe team, summer 2019.

With this knowledge base, we engage the translation between medicine and society. One central way in which we do this is by creating ethical laboratories for researching good ways of integrating personalised medicine into the Danish welfare state. 

We invite clinicians, researchers, industry representatives, and administrators into our ethical labs to discuss the ethical questions they encounter in relation to personalised medicine. Thus, the ethical laboratory is a space for reflection and discussion of ways of doing science and shaping personalised medicine.

Results

Mapping an individual’s genome and combining this knowledge with other data about the individual is at the centre of today’s vision of personalising medicine.

In Denmark, the public debate about personalised medicine in 2017 and 2018 centred on the social life and future of citizens’ genomes stored in the custody of the state. Despite the different views raised in the debate, everyone seemed to understand genomes as closely connected to the individual person. 

They were considered closely attached to the individual—as digital substitutes representing individual patients.

“The DNA is the master key to every citizen’s life and existence”
Feature article in the newspaper Politiken March 19, 2018.

Moreover, the debate created public awareness about the many data that Danes share with the welfare state and the way the state manages these data in a globalized data economy. 

How may genomic data about Danes circulate to national and international institutions as part of developing personalised medicine? In raising such questions, the debate questioned the state’s legitimacy in storing and using citizens’ genomes.

“Today the computerization of society meets its biologization in the form of genomics”
Sociologist Jenny Reardon, The Postgenomic Condition, Chicago University Press 2017.

If the public debate revealed contestation over genomes in state storage, how should we understand the situation in the clinic when patients sit in front of doctors and are asked to consent to having their genomes stored in the National Genome Centre and international databases? 

When investigating these situations across empirical sites, my team and I identified a strong trust among Danes in welfare state institutions. As was the case in the public debate, clinical conversations revealed a dominant understanding of genomes as digital substitutes representing the individual. 

Yet, in the clinical setting, the trust between clinicians and patients also facilitated a strengthened relationship between the welfare state and the individual having his or her data stored in the National Genome Centre.

“Yes of course. It is exciting. I thought I had already said YES to everything”
Diabetes patient being asked to participate in research within personalised medicine.

Figure 3: Laboratory work on human material is an essential part of developing personalised medicine. Photo by Assistant Professor Mie Seest Dam, MeInWe.

Moreover, in the clinical setting, genomes in state storage appeared as a possibility for connecting the individual patient to other “we”s: the “we” of hereditary kin, the “we” of unfamiliar and nonhereditary kin with whom the individual shared a random genetic mutation but no descent, the “we” of future patients, and the “we” of the human species when patients’ genomes entered pharmaceutical companies testing drug efficacy and side effects on the human kind. 

In our research, we show that at the same time as genomes in state storage give way to processes of personalising, they also give way to processes of collectivising. Personalised medicine becomes a possibility for taking a stance and articulating notions of belonging.

References

  • Svendsen, M.N., Navne, L.E., Gjødsbøl, I.M. & Dam, M.S. 2018. A Life Worth Living: Temporality, Care and Personhood. American Ethnologist 45(1): 20-33

  • Bogicevic, I., Rohrberg Kristoffer S., Høgdall, E., Svendsen, Mette N. 2020. The Somatic Mode: Doing Good in Targeted Cancer Therapy. New Genetic and Society doi.org/10.1080/14636778.2020.1799345

  • Green, S., Dam, Mie S., Svendsen, Mette N. Patient-derived Organoids in Precision Oncology. Towards a Science of and for the Individual? Forthcoming in History and Philosophy of the Life Sciences

Other References

  • Prainsack, B. 2017. Personalized Medicine. Empowered Patients in the 21st Century? New York: New York University Press

  • Reardon, J. 2017. The Postgenomic Condition. Ethics, Justice & Knowledge after the Genome. Chicago: Chicago University Press