The Anthropologist Who Explores the Ethics of Personalised Medicine – University of Copenhagen

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13 September 2017

The Anthropologist Who Explores the Ethics of Personalised Medicine

Ethics

How do we administer the good life? This question runs like a red threat through the research of Professor with Special Responsibilities Mette Nordahl Svendsen. She was recently awarded the Carlsberg Foundation’s Semper Ardens Grant of DKK 15 million for her innovative research project MeInWe. The project will be exploring how we as a society can facilitate ethically justifiable and socially just integration of personalised medicine into the Danish society.

There is a world of difference between the Pacific island, which Mette Nordahl Svendsen once imagined would be her future after graduating as an anthropologist, to her cosy office in the old hospital building at CSS on Øster Farimagsgade. The shelves are full of books she has read, and in the corner is a pink figure which both resembles a mirror and a human, but in the colours of a pig.

’It is an art installation that I bought from the artist Maria Zahle in connection with my last big research project. Here I studied, among other things, how the pig as test animal, research tool, commodity is interweaved with the human existence – pig and human reflecting each other. The project was important to me, so I thought it would be appropriate to have in my office’, Mette Nordahl Svendsen says with a smile.

She is professor with special responsibilities at the Section for Health Services Research at the Department of Public Health. She recently received a Semper Ardens Grant from the Carlsberg Foundation of DKK 15 million for research into the social, legal and ethical implications of personalised medicine. It is a project she is looking forward to and which has already attracted great public attention.

‘You see, it is a project that addresses many current agendas – confidence in the healthcare system’s data handling, our opportunities to create personal genetic profiles, the welfare society’s role in modern treatment and, not least, the opportunities to extend life. I have put together a team of talented young researchers, and we are already well under way. I very much look forward to exploring the big questions about how personalised medicine affects what it means to be human’, Mette Nordahl Svendsen explains.

The Important Relation Between the Individual and the Collective
The project is called ’Personalized Medicine in the Welfare State (MeInWe)’, and it focusses attention on the relation between the individual (‘me’) and the collective (‘we’) in the introduction of personalised medicine into the Danish healthcare system. The project will examine how we understand and administer the personal, when knowledge of the morbidity risks and genetic profile of the individual is established by comparing it with data from many other people, as seen in the interplay between the public healthcare system and private companies. MeInWe addresses three main areas of research – oncology, diabetes and psychiatry – and examines the new ways in which individuality, lineage, ethnicity, species and welfare state are established when genetic information together with other health data is prioritised in the effort to customise diagnostics, treatment and prevention for the individual person.

‘What is interesting is that personalised medicine indicates customised diagnostics and treatment of the individual. So we focus on the individual, but our ambition to personalise can only be achieved through the collective. Personalised knowledge is generated by comparing data on the individual with data on many other individuals. Personalised knowledge is thus contingent on collectives such as the welfare society, data populations, lineage and so on. This leads us to the question: How is the personal established? Which welfare society is unfolded? How should genetic data be coupled with our health records?’, Mette Nordahl Svendsen says and continues:

‘With our new knowledge comes a lot of new questions. Let us say that we have collected a sample from a cancer patient to determine which treatment is the best for that particular patient. Perhaps the sample can also tell us whether the patient is at risk of developing other diseases. Should we spend time and resources examining these risk markers? Should we couple them with other types of data on the patient? Should the patient be informed and advised on the sample’s potential? Who should interpret this information? Should the patient spend time and resources getting knowledge that is uncertain and mainly concerns future risks? Should the sample be used in research, which is conducted in cooperation with private companies that make money on it, and which at a later point may lead to new knowledge on the individual person? Our new knowledge and methods lead to a series of social and ethical questions that are new to us’, Mette Nordahl Svendsen explains.

Fieldwork Within Healthcare
Mette Nordahl Svendsen has trained as an anthropologist, and it was not written in the stars that her future would include a career as a researcher when she wrote her thesis on conditions in Rumania after the fall of the Berlin Wall. By coincidence she established contact with Lene Kock, who is currently professor emeritus at the Section for Health Services Research. It became the beginning of a working relationship that has so far lasted 20 years.

‘To anthropologists, fieldwork is the main method for gaining insight. During fieldwork you step into a new world and try to sense and understand and put it into words. My data does not consist of tissue or figures, but of words which I analyse using theory. Working in a team is important to me. It is through our useful discussions, our exchange of experience and creative input that we grow wiser’, Mette Nordahl Svendsen says and stresses:

‘Doing research should be fun, but it also takes courage. It is when we dare to take a different path that we achieve surprising results’.