Returning Results: Let's Be Honest!
JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift)
 
ID 4112839
Author(s) Elger, Bernice S.; De Clercq, Eva
Author(s) at UniBasel De Clercq, Eva
Elger, Bernice Simone
Year 2017
Title Returning Results: Let's Be Honest!
Journal Genetic testing and molecular biomarkers
Volume 21
Number 3
Pages / Article-Number 134-139
Keywords biobanking; honesty; policy; refusal; return of results
Mesh terms Biological Specimen Banks, standards; Humans
Abstract Biobank research has the potential to return results that could have beneficial and even life-saving consequences for participants. This possibility raises some important questions, not only about the ethical duty to return results within a research setting, but also about participants' right to refuse results and researchers' responsibility to respect that choice. This article argues in favor of adopting a return-of-results policy that limits participants' ability to refuse clinically relevant and actionable results. We state that biobanks should allow donors only if they are aware of and agree to this return policy. If they do not agree to this, they retain the option not to participate in the biobank research. The aim of this article is to discuss the practical and ethical reasons in favor of this return-of-result policy and, thus, to underline the importance of "honesty" in biobanking regulations.
Publisher Mary Ann Liebert
ISSN/ISBN 1945-0265
edoc-URL http://edoc.unibas.ch/57963/
Full Text on edoc No
Digital Object Identifier DOI 10.1089/gtmb.2016.0395
PubMed ID http://www.ncbi.nlm.nih.gov/pubmed/28306398
ISI-Number WOS:000397573600004
Document type (ISI) Editorial Material
 
   

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17/05/2022