Ethics Reporting in Biospecimen and Genetic Research: Current Practice and Suggestions for Changes

Modern approaches for research with human biospecimens employ a variety of substantially different types of ethics approval and informed consent. In most cases, standard ethics reporting such as "consent and approval was obtained" is no longer meaningful. A structured analysis of 120 biosp...

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Bibliographic Details
Published in:PLoS biology 2016-08, Vol.14 (8), p.e1002521-e1002521
Main Authors: Chin, William Wei Lim, Wieschowski, Susanne, Prokein, Jana, Illig, Thomas, Strech, Daniel
Format: Article
Language:English
Subjects:
Analysis
Bioethics
Biological Specimen Banks - ethics
Biological Specimen Banks - standards
Biology and Life Sciences
Committees
Earth Sciences
Editorial Policies
Ethics
Genetic research
Genetic Research - ethics
Humans
Information sharing
Informed consent
Informed Consent - ethics
Informed Consent - standards
Medicine
Medicine and Health Sciences
Publishing - ethics
Publishing - standards
Quality
Research and Analysis Methods
Research Report - standards
Science Policy
Studies
Trust
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Summary:Modern approaches for research with human biospecimens employ a variety of substantially different types of ethics approval and informed consent. In most cases, standard ethics reporting such as "consent and approval was obtained" is no longer meaningful. A structured analysis of 120 biospecimen studies recently published in top journals revealed that more than 85% reported on consent and approval, but in more than 90% of cases, this reporting was insufficient and thus potentially misleading. Editorial policies, reporting guidelines, and material transfer agreements should include recommendations for meaningful ethics reporting in biospecimen research. Meaningful ethics reporting is possible without higher word counts and could support public trust as well as networked research.
ISSN:1545-7885
1544-9173
1545-7885
DOI:10.1371/journal.pbio.1002521