ELSI Dialogues: Futureproofing Biobanks’ Governance

Ethically robust governance is key to ensure public trust in biobanking and fair and efficient exploitation of valuable research resources. Principles of good governance include transparency, accountability and appropriate oversight.  

In 2020, Alessandro Blasimme, PhD and colleagues and conducted an empirical study to learn more about precisely which governance mechanisms research biobanks employ and how they fare with respect to established principles of good governance. They reviewed 69 biobanks in Europe and Canada and identified specific mechanisms implemented by biobanks.  

The study highlights that most retrievable information about governance pertains mechanisms that project legitimation onto the operations of biobanks. Considerably less information is available regarding mechanisms that support accountability and oversight.

Given the increasing importance of sample and data repositories for present-day research, these findings and this webinar call for increasing efforts at setting up and communicating appropriate governance mechanisms and procedures. 

Speaker

Alessandro Blasimme, PhD – Department of Health Sciences and Technology, Health Ethics & Policy Lab ETH Zurich – Swiss Federal Institute of Technology