Elger Bernice S, De Clercq Eva
1 Institute for Biomedical Ethics, University of Basel , Basel, Switzerland .
2 University Center of Legal Medicine of Geneva and Lausanne, University of Geneva, Geneva, Switzerland .
Genet Test Mol Biomarkers. 2017 Mar;21(3):134-139. doi: 10.1089/gtmb.2016.0395. Epub 2017 Feb 24.
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.
生物样本库研究有可能返回对参与者具有有益甚至挽救生命后果的结果。这种可能性引发了一些重要问题,不仅涉及在研究背景下返回结果的伦理责任,还涉及参与者拒绝结果的权利以及研究人员尊重该选择的责任。本文主张采用一种结果返回政策,该政策限制参与者拒绝临床相关且可采取行动结果的能力。我们指出,生物样本库仅应在捐赠者知晓并同意此结果返回政策的情况下允许其参与。如果他们不同意,他们保留不参与生物样本库研究的选择权。本文的目的是讨论支持这种结果返回政策的实际和伦理原因,从而强调“诚实”在生物样本库法规中的重要性。