WP13 - Bioethics, patient rights and the plea to communicate

WP-coordinator: Mats Hansson

Clinical research requires trust from patients and public. The COMBINE consortium combines and utilises Sweden’s unique and complete longitudinal information by collecting information from the health care system and from other sources.

Trust in the clinical research we conduct is of great importance. Individuals who contribute their data should feel that they are part of an active and beneficial research process where the end results will benefit all patients with inflammatory disease, rather than passive beneficiaries of science.

The bioethics work package deals with these issues of trust and patients’ perceptions of biomedical research, as well as the rules and guidelines that regulate the research. The bioethics group serves both as monitors of the clinical research and also conducts research on the ethical problems raised by the clinical research itself.

The research conducted in this work package will deal with the ethical issues raised by the research conducted in other work packages. We will address some urgent ethical problems related to how individuals who receive a diagnosis are affected by information about genetic factors and the importance of mastering life style factors that influence the progress of the disease.

Biomedical research is based on trust among collaborating partners, but there is a lack of codes of conduct that recognise contributors and that specify how achievements should be credited. There are also conflicting claims of dispositional rights of biobank material and data. As a part of this work package, we will suggest rules for balancing the interests of stake holders.

Patient and societal involvement in the monitoring of research is important and we will therefore work closely with patient organisations and focus groups.

More information:

Mats G. Hansson, professor of Biomedical Ethics

Sofia Kälvemark, PhD

Centre for Research Ethics & Bioethics
Uppsala University
Uppsala Science Park
SE-751 85 Uppsala


Other collaborators:

Anders Ekbom
Goverment delegation for patient security in research