Exploring possibilities for patient involvement in translational molecular medicine: dialogue as a means to enhance ethical reflection
Project leaders: dr. Marianne Boenink (University of Twente) and dr. Simone van der Burg (IQ healthcare, Radboud University Medical Centre)
Funding: Centre for Society and Genomics and Centre for Translational Molecular Medicine
Duration: January 2012 – December 2013
Translational research (or translational medicine) is meant to enable the effective movement (‘translation’) of the results of scientific research to relevant and useful clinical applications (from ‘bench to bedside’). Translational research focuses on a quicker move from science to its applications partly for economic reasons, but also in view of broader societal concerns. Since the late 1960’s, it has become clear that new technologies are not always considered and experienced as desirable by the intended users or by society at large. As controversies on (among others) breast cancer screening, prenatal screening, cochlear implants for deaf children, genetic testing or assisted reproductive technologies for elderly women (60+) have shown, citizens acknowledge that novel technologies may impact human lives in diverse ways, not all of which are necessarily desirable. To improve the connection between research and technology development on the one hand, and clinical practice and user needs on the other, then, timely reflection on the feasibility and desirability of proposed innovations is needed.
Early reflection and discussion about the potential implications of emerging technologies can contribute to innovations that are ethically acceptable, socially robust and widely used. A well-established way to generate such early reflection is to engage future users and stakeholders early on in the development of new technologies. In the field of translational medicine, such early engagement of future users is as yet not systematically attended to. This project will address this gap, focusing on a specific group of users: patients. It aims to investigate when and under which conditions patient involvement in scientific research teams can be conducive to bridging the gap between bench and bedside and ultimately contribute to responsible innovation in the biomedical domain.
The project has been developed in interaction with the Dutch Center for Translational Molecular Medicine (CTMM), which wishes to investigate the feasibility of patient involvement in translational research. CTMM supports the approach advocated in this project, that combines a qualitative study of present attitudes, practices and experiences with patient involvement, with an exploration of possibilities to involve patients or patient perspectives in future research. The main objectives of the project are:
1. To develop an approach to patient involvement in scientific research teams which (a) targets translational research in molecular medicine, and (b) is oriented towards furthering ethical reflection among the partners in the project.
2. To contribute to responsible innovation by means of the development of an empirically and theoretically documented advice on the feasibility and the added value of patient involvement in translational research, in particular in the context of the Centre for Translational Molecular Medicine.
To realize these objectives the project will employ two postdocs and two senior researchers. Together they will carry out (a) a literature study on methods for ethical reflection among stakeholders during scientific research and technology development, as well as on patient involvement in clinical research and translational research. In addition, a questionnaire and several focus groups will be used to clarify the motivation (and resistance) of partners in current translational research projects to involve patients in their research project teams. Finally, three case studies on patient involvement in ongoing translational research projects will be performed, using mixed methods (interviews and focus groups), to explore the possibilities for patient involvement in translational research projects.
For more information:
Dr. Marianne Boenink, firstname.lastname@example.org, phone +31 (0)53 4893309
Dr. Simone van der Burg, email@example.com, phone +31 (0)24 3610138