Regulatory and Ethics Working Group

(Formerly the Informed Consent Procedures for the Collection of Biospecimens Working Group)
Co-Chairs: Scott Jewell and Maddie Williams

There is much interest from research and medical centres around the world in developing a biospecimen bank that represents all patients who enter a hospital system. The issue with this, however, is that most governments require a patient's consent in order to share their medical history and biospecimens between medical and research centres. Attempts are being made to gather the required informed consent forms, and because of this it would be helpful to establish the most commonly used methods in gathering the consent and the respective justifications for the processes. This is the goal of the Regulatory and Ethics Working Group.


  1. Gather information from various institutions regarding how they ask a patient for consent to donate their biospecimens to general or specific research use, including the ethical arguments and education provided to the patient, and the guidelines used to decide when and when not to ask a patient for consent.
  2. Create and implement a plan on how to best gather and analyze information in order to create a guide for institutions on procedures for gathering informed consent and to publish this guide in ISBER's Best Practices publication.


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