Dealing with genetic risk information


How do we evaluate and handle genetic risk information? For the coming six years, the Centre for Research Ethics & Bioethics (CRB) will co-ordinate an international research project to support health care, patients and decision makers.

Rapid progress in biomedical research keeps providing us with new information on genetic variations and their connection to risk for disease and adverse drug effects. It gives us hope for personalized treatments and disease prevention. But do health care staff and the individual patient really have the skills to evaluate and handle all the risk information that is available?

The Centre for Research Ethics & Bioethics is about to start co-ordinating an international multi-disciplinary research project that aims to provide better tools to handle genetic risk information.

“There is a lot of funding and effort going into genetic risk information technology. Not least in Sweden with SciLifeLab. We will work at the other end and provide better clinical application of the results”, says Mats G. Hansson, director at CRB and professor of biomedical ethics.

The scientific structure of this international research collaboration is made up of philosophy, psychology, medicine, health economy and empirical studies of risk assessment and preferences. The group will develop material for in depth ethical analysis to help guide people who have to approach and handle genetic risk information. One way of doing this is by analyzing how patients value risks and benefits of treatment.

“We need more research to understand the complexity of the individual’s preference formation. We hope that the results of our research will help support health care, patients and policy makers evaluate and handle genetic risk information”, says Mats G. Hansson.


The project group consists of researchers from Uppsala, Göttingen, Manchester, Milan, Stockholm, Maastricht and Birmingham.

The work is funded by Riksbankens Jubileumsfond (the Swedish Foundation for Humanities and Social Sciences).

One of the outcomes is a tool for assimilating and understanding risk information in the form of an interactive web based game.

By Magnus Alsne

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