Medical ethics, decision-making and patient preferences

Health care and drug development raises several philosophical questions that require practical solutions: How can patients become informed enough to answer questions in a way that is meaningful? How do we make genetic risk information understandable and meaningful? Here, Ulrik Kihlbom reflects on what happens at the intersection of philosophy and empirical work.

Ulrik Kihlbom
Ulrik Kihlbom, Senior lecturer in medical ethics

As a philosopher, Ulrik Kihlbom has always been interested in methodology. Especially the relation between ethical theory and practice. He believes empirical studies can make a real contribution to medical ethics. He also thinks philosophy has a lot to offer empirical research. Not just as a tool to discuss theoretical issues studies raise. It can also play a role in the development of empirical projects. Moreover, according to Ulrik Kihlbom, philosophy can inform analysis of data, not to mention the discussion of results in relation to ethical issues.

Right now, he is involved in two large research projects: PREFER is focusing on how and when patient preferences should play a role in drug development. While Mind the Risk is looking at management of genetic risk information. When he is not busy doing research, Ulrik Kihlbom teaches medical ethics at Uppsala University. For him, the research informs his teaching, and vice versa.

He gives patient participation as an example: How do we handle patient participation in decision-making when what is best for the patient is not, necessarily, what the patient wants? There is a clear asymmetry in both knowledge and dependency between doctors and patients. This comes with power and authority and begs the question of when to use this authority, and when to listen to the patient.

According to Ulrik Kihlbom, a project like PREFER raises important philosophical questions. It is easy to say that we will listen to the patient’s voice, but patients do not have one voice. How do we make sure we listen to the “right” patient voices? How do patient voices relate to the public’s voice? Moreover, if we manage to find the right patient voices, how strong should it be? He sees clear links to the kind of decision-making he often discusses with medical students: in the relationship between doctors and patients.

PREFER is a public-private partnership. This means academic researchers work together with patient organisations, health technology assessment bodies and pharma companies. The aim is to develop recommendations for when and how to include patient preferences in decision-making during the entire lifecycle of medical products. The recommendations are for the companies that develop drugs, the authorities that approve, and the authorities that make decisions on pricing. The focus is on methods to elicit preferences, but that does not mean there are no philosophical challenges. Ulrik Kihlbom leads work on educational tools to develop the methods to elicit well-informed preferences. Because patients need knowledge to be able to express what they prefer and be able to make decisions and weigh risks and benefits against each other. The same way patients or research participants need to know what genetic risk information means for it to be meaningful to give them results of genetic tests.

“The authorities that will use the results from PREFER are not primarily interested in preferences in terms of what type of products people prefer over others. They want to know what people actually think and want when they are well informed and have knowledge about what the different options mean for them”, says Ulrik Kihlbom.

Health economists have not put so much thought into this aspect before and Ulrik Kihlbom believes that the PREFER project can make a real contribution by finding out how patients can become informed.

 “This also raises an important and interesting philosophical question: What does it mean to be well-informed”, says Ulrik Kihlbom.

About Ulrik Kihlbom:

Ulrik Kihlbom is Associate Professor and Senior Lecturer in Medical Ethics at Uppsala University. He has been interested in decision-making and patient’s participation in health-care for almost two decades. One of his most cited publications deals with informed consent. He has worked on this topic both on his own and together with others on ethics of families, genetic risk information, clinical cancer trials and in PREFER.

Ulrik Kihlbom has worked at the Centre for Research Ethics & Bioethics (CRB) since 2009 He has a PhD in Practical philosophy on Ethical Particularism from Stockholm University and has previously worked as lecturer at Örebro University.


The Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (PREFER) project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 115966. This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation programme and EFPIA.

This text and its contents reflects the author’s veiw and not the view of IMI, the European Union or EFPIA.

PREFER on Ethics Blog

Josepine Fernow, 26 June 2017