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The Carlsberg Foundation grants 15 million DKK for research on ethical aspects of personalised medicine

Personalised medicine is gaining ground, which increases the need for more basic research on the ethical, legal and organisational aspects of the development and use of it. The Carlsberg Foundation grants 15 million DKK to Professor Mette Nordahl Svendsen, Department of Public Health at University of Copenhagen, for the research project “Personalized Medicine in the Welfare State (MeInWe).

At the turn of the year, the government and “Danish Regions” presented a national strategy for personalised medicine. This strategy makes Denmark an active partner of an international development with the ambition of adjusting medical diagnostics, treatment and prevention to a more personal fit for the individual patient.

“In the light of the new national strategy and the increased focus, which currently goes to developing medicine customised to fit the individual patient, The Carlsberg Foundation has considered it an evident choice to initiate a research project, aimed at shedding a basic scientific light on the ethical, legal and organisational challenges, which follow in the wake of this fast-growing field. We are pleased to support a project, which will contribute new important knowledge to improve our ability to handle ethical aspects in a proactive rather than reactive manner”, says the chairman of the Carlsberg Foundation, Flemming Besenbacher.

Personalised medicine concerns both the individual and the collective

Respecting the autonomy and privacy of the individual has traditionally been the foundation of the ethical and legal regulation of the health care system, and the well-informed individual’s right to self-determination has been considered the crucial mechanism in securing civil rights and trust in the health care system.

“Personalised Medicine in the Welfare State” is going to investigate, i.a. how terms like person, medicine and treatment are delimitated and understood in a health organisational context as well as in public. How is the “person” to be governed when the basic ethical, legal and organisational frame no longer matches the everyday reality of patients, trial participants, researchers and clinicians? What happens, when the person manifests itself as data? How is individuality, autonomy and authenticity conceived?

“There is a need to investigate how representatives of the industry, administrators of the health care system, doctors, scientists and patients experience the new opportunities for genetic information and how they operate in a field where much is possible, yet much is still in its infancy. Although personalised medicine is aimed at the individual, it is created on the foundation of or in relation to a collective – for instance species, kin, reference genome, national community, health care system or welfare state. The project investigates how “the personal” is conceived and which collectives are implicated in “the personal”. That is why the project is called “me in we”, says Mette Nordahl Svendsen.

For the benefit of the Danish people

With the national strategy, Personalised Medicine has risen high on the agendas of the government and ”Danish Regions”, and work is done for the new opportunities to benefit the Danish people in the best way possible.

“With Personalised Medicine, we are able to make treatment of the individual patient more effective. We already know this from some cancer types, where gene technology makes it possible to ensure the correct treatment with less side effects the first time. Our hope is, that it will also be able to benefit people with some of the prevalent common illnesses like arthritis and diabetes. Doctors must get more acute knowledge on the underlying causes for disease, e.g. genetic mutations. The development, at the same time, raises some important ethical questions. What do each of us want to know about our possible future illnesses? Therefore, it is a good thing, that funds are dedicated to the purpose of diving into exactly this field. With the national strategy, we are cooperating on treatment, research, knowledge and investment, and we focus strongly on involving citizens and patients”, says minister of health, Ellen Trane Nørby.

As a foundation for the strategy, the government has dedicated 100 million DKK on the Finance Bill of 2017 over the course of the next 4 years for co-financing the work with personalised medicine. Chairman for “Danish Regions”, Bent Hansen states:

“Our clinicians already use genetic testing to a wide extent to target treatment. And we have for a long time advocated a more intensive focus on the ethical dilemmas. “Danish Regions” fondly welcome the donation from the Carlsberg Foundation. In the future, many more citizens will be able to benefit from personalised medicine. It can mean huge progress in treatment, and both medical and ethical aspects are relevant to analyse. It should happen with contributions from researchers as well as the population, as the large amount of information has to be used in a determined, yet considerate manner, in the best interest of the citizens in the health care system of the future.

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