29 May 2020
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Guide for researchers on how to deal with incidental findings now available in English

BBMRI.nl developed a guide for researchers and research groups. It presents a practical and ethical frame for detecting, dealing with and informing about incidental findings in (biobank) research. The guide has now been translated into English. 

In biomedical research involving human subjects, incidental findings can be uncovered that are beyond the scope of the research but may be of relevance to the health of the research participant. Incidental findings place researchers before an ethical dilemma: disclosing information about incidental findings to participants may be beneficial, but it may also be harmful, and potentially unwanted.  

The BBMRI.nl guide discusses possible options and best practices. Until recently, the guide was only available in Dutch. Dr Eline Bunnik from the Erasmus MC, co-author of the guide, explains: “Now that an English translation is available, the guide is accessible to research groups in other countries, where it might contribute to more harmonious and ethically responsible practices for the detection, management and communication of incidental findings in biobank research.” 

Michaela Mayrhofer, head of ELSI services and research confirms:  "Making the guide accessible to the entire biobanking community will advance the discussion of careful handling of incidental findings“

This service was funded as a BBMRI-Voucher project and developed in collaboration with BBMRI-WP6. The guide was published in December 2017. The translation of this report was funded by BBMRI-ERIC in line with the activities of its Common Service ELSI. 

The English Guide to the detection, management and communication of incidental findings for biobanks in BBMRI-NL as interactive PDF 

Further information on the original Dutch publication.