Precision medicine and what it means to be human

Mette N. Svendsen is Professor of Medical Anthropology and Director of the Master of Public Health Programme at the University of Copenhagen.

She is directing the research project Personalised Medicine in the Welfare State (MeInWe), a five-year Danish study, which began six months ago and explores the ethical, organisational and regulatory frameworks in the field of personalised medicine, with particular focus on oncology, diabetes and cardiology. 

Here, she speaks to PMF Editor Mark Glover about the project, ahead of her presentation at the Nordic Precision Medicine Forum in Copenhagen.

Can you explain a little bit about the project and what your mains threads of research will be?

MeInWe focuses on the social, legal and ethical aspects of precision medicine (PM) in Denmark; collaborating with clinicians and researchers in the field.

We are interested in the way that a patient becomes a potential research subject and contributor to the treatment of other people. How does PM contest the ethical, organisational and regulatory boundaries between patient and research subjects and the boundaries between a healthy person and a diseased person? PM generates knowledge about genetic risks, so how do patients and citizens see the line between a manifest illness and a risk?

Finally, we will be investigating the relationship between the individual and society. One might think that PM is about the individual me, but genetic knowledge in this field is generated by comparing information about the individual with what is in a database – data from thousands of other individuals – so, what in a sense becomes personal is the relationship between the individual and all of the other individuals in the database. This is why the project is called the “me” in the “we”.

Why, in Denmark, do some people fear sharing their health data?

On the one hand, people in the Nordic countries people present an incredible trust in public health care institutions and a willingness to share data without explicit consent. In the Nordic countries, we tend to get upset if we enter a clinic and the doctor has not read our medical records, rather than being upset that the doctor has access in the first place. On the other hand, in the Danish public debate about personalized medicine, some voices are critical and think that genetic data should not leave the embodied subject unless there are consent forms.

I think the concerns and uneasiness about banking genetic data are related to the way we tend to see genetic data as a containing a truth about the person—as almost substitutes or data doppelgangersofpersons. When we talk about genetic data; no-one treats it as neutral information. The close connection between genetic data and person creates fears about what genetic data are used for, who accesses the data, and how genetic data enter for-profit enterprises and may leave the health care institutions we trust.

So, does Precision Medicine mean we are still human?

What is so fascinating about PM is the way genetic technologies and computer power are so essential for generating knowledge. Nevertheless, listening to the public conversations about PM,

the question always keeps coming back to the human – how to protect the individual, so in a way the human has not disappeared at all. On the contrary, we seem more obsessed with the human person than ever before.

What inspires you about the project?

I’m super interested in the way we question what we’ve become in light of new medicine and technology. Through this project we’re trying to find out the ethical challenges that clinicians, industry representatives, researchers, patients and citizens face. We don’t just tick all this data and then write our scientific data; we’re going to run ethical laboratories and invite our collaborators – heads of clinics and research labs – into this ethical lab and discuss our findings and how best to integrate them into the field. We want to find practical answers around the organisation of PM, so in that sense, I’m eager to engage in dialogue and conversation with people for who this is their everyday work.

Mette N. Svendsen will be speaking at the Nordic Precision Medicine Forum in Copenhagen which takes place from March 20 – 21. You can register for the event here