Elsevier

Genetics in Medicine

Volume 14, Issue 4, April 2012, Pages 484-489
Genetics in Medicine

special-article
International normative perspectives on the return of individual research results and incidental findings in genomic biobanks

https://doi.org/10.1038/gim.2012.13Get rights and content
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Abstract

Managers of genomic biobanks constantly face ethical and legal challenges ranging from issues associated with the informed consent process to procedural concerns related to access by researchers. Yet, with the availability of next-generation sequencing technologies, one topic is emerging as the focus of ongoing debate: the return of individual research results and incidental findings to participants. This article examines this topic from an international perspective, where policies and guidelines discussing the matter in the context of genomic biobanks and genomic research are analyzed and commented. This approach aims to highlight the shortcomings of these international norms, mainly the danger arising from both the therapeutic misconception and the conflation of research results with incidental findings. This article suggests some elements to consider in order to complement available guidance at the international level.

Genet Med 2012:14(4):484–489

Keywords

biobanks
general research results
genomic research
incidental findings
individual research results
international norms

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