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  1. Returning Individual Research Results from Digital Phenotyping in Psychiatry.Francis X. Shen, Matthew L. Baum, Nicole Martinez-Martin, Adam S. Miner, Melissa Abraham, Catherine A. Brownstein, Nathan Cortez, Barbara J. Evans, Laura T. Germine, David C. Glahn, Christine Grady, Ingrid A. Holm, Elisa A. Hurley, Sara Kimble, Gabriel Lázaro-Muñoz, Kimberlyn Leary, Mason Marks, Patrick J. Monette, Jukka-Pekka Onnela, P. Pearl O’Rourke, Scott L. Rauch, Carmel Shachar, Srijan Sen, Ipsit Vahia, Jason L. Vassy, Justin T. Baker, Barbara E. Bierer & Benjamin C. Silverman - 2024 - American Journal of Bioethics 24 (2):69-90.
    Psychiatry is rapidly adopting digital phenotyping and artificial intelligence/machine learning tools to study mental illness based on tracking participants’ locations, online activity, phone and text message usage, heart rate, sleep, physical activity, and more. Existing ethical frameworks for return of individual research results (IRRs) are inadequate to guide researchers for when, if, and how to return this unprecedented number of potentially sensitive results about each participant’s real-world behavior. To address this gap, we convened an interdisciplinary expert working group, supported by (...)
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  • An implementation framework for the feedback of individual research results and incidental findings in research.Adrian Thorogood, Yann Joly, Bartha Maria Knoppers, Tommy Nilsson, Peter Metrakos, Anthoula Lazaris & Ayat Salman - 2014 - BMC Medical Ethics 15 (1):88.
    This article outlines procedures for the feedback of individual research data to participants. This feedback framework was developed in the context of a personalized medicine research project in Canada. Researchers in this domain have an ethical obligation to return individual research results and/or material incidental findings that are clinically significant, valid and actionable to participants. Communication of individual research data must proceed in an ethical and efficient manner. Feedback involves three procedural steps: assessing the health relevance of a finding, re-identifying (...)
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  • Return of Results: Towards a Lexicon?Bartha Maria Knoppers & Amy Dam - 2011 - Journal of Law, Medicine and Ethics 39 (4):577-582.
    Currently, the return of results in the domain of biobanking constitutes an ethical and legal quagmire, whether it involves population or specific clinical research studies. In light of the fact that population biobanks are often not seen as distinct from those biobanks created for disease research, as well as the uncertainty as to what “return of results” means concretely, this lexicon attempts to demystify the terminology. The terms — results, return, clinical significance, and utility — are discussed. Through an analysis (...)
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  • Return of Results: Towards a Lexicon?Bartha Maria Knoppers & Amy Dam - 2011 - Journal of Law, Medicine and Ethics 39 (4):577-582.
    The last few years have witnessed the growth of large-scale, population genomics biobanks, which serve as longitudinal, gene-environment databases for future yet unspecified research. An international consortium, the Public Population Project in Genomics, builds harmonization tools for such biobanks and has catalogued numerous studies — at least 139 with over 10,000 banked participants and 34 with over 100,000. As their potential use for translational, clinical research draws near, it is opportune to clarify the duties of such biobanks to communicate results (...)
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  • Examining the use of consent forms to promote dissemination of research results to participants.Dorothyann Curran, Mike Kekewich & Thomas Foreman - 2018 - Research Ethics 15 (1):1-28.
    It is becoming widely recognized that dissemination of research results to participants is an important action for the conclusion of a research study. Most research institutions have standardized consent documents or templates that they require their researchers to use. Consent forms are an ideal place to indicate that results of research will be provided to participants, and the practice of inserting statements to this effect is becoming more conventional. In order to determine the acceptance of this practice across Canada we (...)
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