BBMRI community - Self-initiated donation

Parallel session of the Health-RI conference 2021

• Date: 4 March 2021 
• Time: 16:40-17:10

Format

Presentation, discussion

Target group

Everyone who is interest in receiving support from the Patient and Public Advisory Council, focussing not only on the biobank Community but also broader, including scientists, data managers, ELSI specialists, etc.

Summary

In the parallel session ‘BBMRI community – Self-initiated donation’ we present the work, mandate and mission of the BBMRI Patient & Public Advisory Council (PPAC). Since biobank research depends largely on voluntary participation, and biobanks contain data and samples from citizens and/or patients, public trust and societal involvement are crucial. To ensure the ideas and concerns of these groups are heard, the PPAC was created. We will discuss how the PPAC can be of service to biobanks and how the PPAC can help raise awareness about biobanking and biobank research. We will present the agenda of the PPAC for the coming year. This includes the organization of a webinar for the general public with a presentation of biobanking-basics and the presentation of examples. The session also asks input from ‘biobankers’ on three items:

1. What are good examples of the use of biobank tissues/data that have led to relevant changes in treatment/diagnostic procedures?
2. How can the PPAC help biobanks and specifically researchers that use tissues/data stored in biobanks with their project?
3. Whether it is possible for patients to donate tissues/data to biobanks on their own initiative. This question was raised by patients and the PPAC wants to query if there is experience with this and what would be advised.

Host/speaker:

• host/speaker: Eric Vermeulen, VSOP
• co-host: Robin Verjans, Lygature