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Related Experiment Video

Updated: Jun 10, 2026

Working with Human Tissues for Translational Cancer Research

Working with Human Tissues for Translational Cancer Research

Published on: November 26, 2015

Simplifying informed consent for biorepositories: stakeholder perspectives.

Laura M Beskow¹, Joëlle Y Friedman, N Chantelle Hardy

¹Center for Genome Ethics, Law & Policy, Duke Institute for Genome Sciences & Policy, Duke University, Durham, North Carolina 27708, USA. laura.beskow@duke.edu

Genetics in Medicine : Official Journal of the American College of Medical Genetics

|August 11, 2010

Summary

This summary is machine-generated.

Stakeholders have differing views on essential biorepository consent information. Simplifying consent forms requires addressing these diverse perspectives for broader research participation.

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Establishment of a Clinic-based Biorepository

Establishment of a Clinic-based Biorepository

Published on: May 29, 2017

Area of Science:

Biobanking and Research Ethics
Informed Consent in Human Subjects Research

Background:

Biorepository consent forms are increasingly lengthy and complex.
Effective communication of complex information is crucial for informed consent.

Purpose of the Study:

To identify essential information for prospective participants in biorepository studies.
To gather stakeholder perspectives for developing simplified consent forms.

Main Methods:

Surveyed 52 research participants, 12 researchers, and 20 institutional review board (IRB) representatives.
Participants highlighted key sentences in a model biorepository consent form.

Main Results:

IRB representatives identified 72.3% of sentences as important, researchers 53.0%, and participants 40.4%.
Participants prioritized information on research results, privacy risks, and data sharing.
Researchers focused on purpose, privacy, costs, and results access; IRBs on data collection, medical records, and storage duration.

Conclusions:

Divergent stakeholder priorities complicate the creation and adoption of simplified consent forms.
Addressing these differing perspectives is necessary for advancing simplified consent in biobanking and other research areas.