Partnering with patients in translational oncology research: ethical approach

Journal of Translational Medicine

Giovanna Marsico¹  Cécile Badoual²  Claude Rambaud³  Anita Burgun⁴  Patrice Marvanne⁵  Pierre Laurent-Puig⁶  Christian Hervé⁷  Florian Scotté⁷  Marie-France Mamzer⁷  Nathalie Duchange⁷  Sylviane Darquy⁷  Catherine Cerisey⁸ 

[1] Cancercontribution.fr;Centre de Ressources biologiques, Service d’anatomo-pathologie, Hôpital Européen Georges Pompidou, Assistance publique-Hôpitaux de Paris;Collectif Interassociatif Sur la Santé (CISS);Département d’informatique médicale, de biostatistique et de santé publique, Hôpital Européen Georges Pompidou, Assistance publique-Hôpitaux de Paris;Independent patient representative;Inserm UMR-S 1147, Université Paris Descartes;Laboratoire d’Ethique Médicale et Médecine Légale EA4569, Faculté de Médecine, Université Paris Descartes;Patients & Web;

关键词: Medical ethics;    Personalized medicine;    Patient-centered approach;    Translational research;    Translational ethics;   

DOI  :  10.1186/s12967-017-1177-9

来源: DOAJ

【 摘 要 】

Abstract Background The research program CARPEM (cancer research and personalized medicine) brings together the expertise of researchers and hospital-based oncologists to develop translational research in the context of personalized or “precision” medicine for cancer. There is recognition that patient involvement can help to take into account their needs and priorities in the development of this emerging practice but there is currently no consensus about how this can be achieved. In this study, we developed an empirical ethical research action aiming to improve patient representatives’ involvement in the development of the translational research program together with health professionals. The aim is to promote common understanding and sharing of knowledge between all parties and to establish a long-term partnership integrating patient’s expectations. Methods Two distinct committees were settled in CARPEM: an “Expert Committee”, gathering healthcare and research professionals, and a “Patient Committee”, gathering patients and patient representatives. A multidisciplinary team trained in medical ethics research ensured communication between the two committees as well as analysis of discussions, minutes and outputs from all stakeholders. Results The results highlight the efficiency of the transfer of knowledge between interested parties. Patient representatives and professionals were able to identify new ethical challenges and co-elaborate new procedures to gather information and consent forms for adapting to practices and recommendations developed during the process. Moreover, included patient representatives became full partners and participated in the transfer of knowledge to the public via conferences and publications. Conclusions Empirical ethical research based on a patient-centered approach could help in establishing a fair model for coordination and support actions during cancer research, striking a balance between the regulatory framework, researcher needs and patient expectations. Our approach addresses the concept of translational ethics as a way to handle the main remaining gap between combining care and research activities in the medical pathway and the existing framework.

【 授权许可】

Unknown