White papers

Public outreach for biobanks, a manual

Biobanks rely on citizen participation. Public outreach by biobanking institutions is a way to make the general public aware of their existence and their important role in biomedical research. By creating a positive attitude towards biobanks and the biomedical research they enable, people will be able to recognize their worth for science and society and acquire greater trust in biobanking institutions.

The public outreach manual for biobanks provides the strategy and tools to deliver an interactive public outreach day aimed at promoting public engagement and participation in Netherlands biobanks. Its findings and recommendations are based on interviews with biobank representatives to discover practical approaches, tools and communications materials.

Appendix to the public outreach manual for biobanks

 


Whitepaper Self Measurements

Self-measurement can bridge the gap between the need felt by many people in society to have more control over their health and health data on the one hand, and keeping those people involved in research on the other hand. This requires cooperation between the participants, research organisations and the government authorities concerned.

The Whitepaper Self measurements shows that the use of self-measurement methods does not diminish the role of biobanks and other research organisations but changes it. Read more


The Donor as Partner

In November 2014, the book ‘The donor as partner’ was distributed among biobanking coordinators and patient advocacy groups. The book sums up the methods and levels of patient participation in the governance of biobanks and serves as a guideline for biobanks and participants alike to find the most appropriate model of participation for their specific situation. You can find the pdf here, in English and Dutch (or you can order a paper copy by sending an email to info@bbmri.nl). 

More detailed information about the book can be found here.