Ethical, social and health policy issues in biobanking for prospective genomic research

This research was completed in september 2014

Principal investigators:
Gaia Barazzetti, Ethics Unit, CHUV – Lausanne University Hospital ; Ethos – Interdisciplinary Ethics Platform, University of Lausanne;
Lazare Benaroyo, Ethics Unit, CHUV – Lausanne University Hospital ; Ethos – Interdisciplinary Ethics Platform, University of Lausanne;
Alain Kaufmann, Science-Society Interface, Ethos – Interdisciplinary Ethics Platform, University of Lausanne

Co-investigators:
Murielle Bochud, Institute of Social and Preventive Medicine, CHUV – Lausanne University Hospital
Florence Fellmann, Service of Medical Genetics, CHUV – Lausanne University Hospital

Researchers:
Francesca Bosisio, Ethics Unit, CHUV – Lausanne University Hospital

The implementation and functioning of large-scale biobanks for prospective genomics research involve several ethical, social and health policy issues, such as: questions related to the informed consent process; the trustworthiness of the biobank and public attitudes about issues of individual and collective interest (data protection, data sharing, exploitation for research, ownership, etc.); the feedback of individual results from research to biobank participants. These issues need to be explored in the context of the Lausanne Institutional Biobank (BIL) to assess potential clinical and social benefits of this resource.

The specific questions that will be addressed and investigated in this research project are:

• What model of informed consent would be best adapted to the BIL, in order to protect participants’ interests and facilitate long-term participant-researcher collaboration in research?
• What framework for biobank governance would be best adapted to the BIL, in order to improve its societal value and ensure that ethical issues of individual and broad public interest are taken into account in all biobank activities (from data collection to data sharing, to the setting of research priorities, etc.)?
• What disclosure policies and procedures to feedback individual results to participants would be best adapted to the BIL, in preparing for future research on data collected? 

• Barazzetti G., Kaufmann A., Benaroyo L., « Enjeux éthiques et sociaux de la médecine génomique », PRAXIS, 103(10), 2014 : 573-577.

Barazzetti G., Benaroyo L., « Ethics in biobank governance. Interdisciplinary approach to ethical issues in biobanking for genomics research », EACME – European Association of Centres of Medical Ethics, Annual conference, 19-21 September 2013, Bochum, Germany

Barazzetti G., « Informed consent in biobanking for prospective genomic research », Autumn seminar of the SGBE/SSEB – Swiss Society for Biomedical Ethics, 7-9 November 2013, Bigorio, Switzerland
 

Gaia.Barazzetti@unil.ch