A few weeks ago, Veritas IRB co-sponsored an ACRP Canada conference entitled Biobanking: Ethical, Regulatory and Practical Considerations for Clinical Trials.
All of Montreal’s university research centres were represented as well as industry and private research sponsors highlighting the importance of biobanking for a variety of research disciplines.
The conference kicked off with a passionate presentation from Étienne Crevier, geneticist and CEO of BiogeniQ. Étienne’s presentation focused on the importance for R&D companies to develop a responsible approach to biobanking. Étienne also expressed how costs could be managed by establishing a framework for the potential use of collected samples. Through proper planning at the inception of the biobank, companies can prevent situations where they would need to re-contact research participants to use their samples for future studies.
Étienne’s presentation was followed by Yann Joly, associate professor at McGill’s Centre of Genomics and Policy, and board member of Veritas IRB. Yann presented a pragmatic overview of the key ethical and policy issues faced by biobankers. Using concrete examples, Yann introduced “The biobank ecosystem”, outlining the responsibilities of biobankers before, during and after the creation of a biobank. Yann proposed a governance framework in order to properly manage and oversee the biobank ecosystem. Such framework, although comprehensive, can easily be modified to fit any biobank, no matter its size.
The final presentation of the night came from Alexandra Obadia, Executive Director of CARTaGENE. CARTaGENE is one of Quebec’s largest biobanks, holding over 43,000 research participants’ biological samples and health data. Alexandra focused on the importance of gaining and maintaining the public’s trust at every stage of biobanking and used the approach of CARTaGENE to illustrate her point. For example, CARTaGENE has implemented an extensive informed consent process wherein research participants have access to information before and after consent, through informational brochures, calling centres, a dedicated website and an annual newsletter. Alexandra stressed that a biobank’s success depends on the capacity to recruit the targeted population and on obtaining a consent that meets the objectives of the biobank. Biobankers need to plan ahead in order to develop a solid recruitment strategy in line with the objectives of the biobank, a rigorous governance framework to protect research participants and gain their trust, and a comprehensive communication strategy with research participants before, during and after their contribution to the biobank.
We would like to thank our speakers and ACRP Canada for making this educational session a great success.