Returning Results: Let's Be Honest!

Elger, Bernice S. and De Clercq, Eva. (2017) Returning Results: Let's Be Honest! Genetic testing and molecular biomarkers, 21 (3). pp. 134-139.

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Official URL: http://edoc.unibas.ch/57963/

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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.
Faculties and Departments:08 Cross-disciplinary Subjects > Ethik > Institut für Bio- und Medizinethik
UniBasel Contributors:De Clercq, Eva and Elger, Bernice Simone
Item Type:Article, refereed
Article Subtype:Research Article
Publisher:Mary Ann Liebert
Note:Publication type according to Uni Basel Research Database: Journal article
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Last Modified:20 Jun 2018 15:43
Deposited On:20 Jun 2018 15:43

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