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    Reconsidering Open‐Ended Consent for Biospecimen and Health Record Research in the United States and Europe


    Rothstein, Mark A., Rajasekaran, Prabha and Dove, Edward (2025) Reconsidering Open‐Ended Consent for Biospecimen and Health Record Research in the United States and Europe. Ethics and Human Research, 47 (4). pp. 43-50. ISSN 2578-2363

    Abstract

    Translational and other modern forms of biomedical research often use stored biospecimens and the health records of individuals whose biospecimens will be used in research. As part of the enrollment process for biobank‐based research, individuals are frequently asked to provide informed consent for access to and use of their current and future health records. Although individuals might readily agree to give researchers access to their current health records, they might not realize that their future health records could contain new stigmatizing or embarrassing information. Reasonable limits on future health record disclosures in both the U.S. and Europe can address health privacy concerns without impeding research.
    Item Type: Article
    Keywords: biobanks; biobank-based research; biospecimens; health records; Common Rule; informed consent; European Union (EU); health records; privacy; human research ethics; translational research;
    Academic Unit: Faculty of Social Sciences > Law
    Item ID: 21390
    Identification Number: 10.1002/eahr.60028
    Depositing User: Edward Dove
    Date Deposited: 07 Apr 2026 13:57
    Journal or Publication Title: Ethics and Human Research
    Publisher: Wiley
    Refereed: Yes
    Related URLs:
    Use Licence: This item is available under a Creative Commons Attribution Non Commercial Share Alike Licence (CC BY-NC-SA). Details of this licence are available here

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