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http://hdl.handle.net/1942/32913
Title: | The Impact of Incidental Findings Detected During Brain Imaging on Research Participants of the Rotterdam Study: An Interview Study | Authors: | Bomhof, Charlotte H. C. Van Bodegom, Lisa Vernooij, Meike W. PINXTEN, Wim De Beaufort, Inez D. Bunnik, Eline M. |
Issue Date: | 2020 | Publisher: | CAMBRIDGE UNIV PRESS | Source: | CAMBRIDGE QUARTERLY OF HEALTHCARE ETHICS, 29 (4) , p. 542 -556 (Art N° PII S0963180120000304) | Abstract: | This interview study investigates the short- and long-term implications of incidental findings detected through brain imaging on research participants' lives and their surroundings. For this study, nine participants of the Rotterdam Scan Study with an incidental finding were approached and interviewed. When examining research participants' narratives on the impact of the disclosure of incidental findings, the authors identified five sets of tensions with regard to motivations for and expectations of research participation, preferences regarding disclosure, short- and long-term impacts and impacts on self and others. The paper shows: (1) that the impact of incidental findings may be greater than participants at first let on; (2) incidental findings can have significant effects on participants' social environment; and (3) participants may not feel prepared for disclosure even if incidental findings have been discussed during the informed consent process. The authors call for investigators to be aware of research participants' experiences and these short- and long-term impacts when designing suitable courses of action for the detection and management of incidental findings in research settings. | Notes: | Bomhof, CHC (corresponding author), Erasmus MC, Dept Med Eth Philosophy & Hist Med, Rotterdam, Netherlands. | Other: | Bomhof, CHC (corresponding author), Erasmus MC, Dept Med Eth Philosophy & Hist Med, Rotterdam, Netherlands. | Keywords: | incidental findings;imaging studies;interview study;research ethics;social impact | Document URI: | http://hdl.handle.net/1942/32913 | ISSN: | 0963-1801 | e-ISSN: | 1469-2147 | DOI: | 10.1017/S0963180120000304 | ISI #: | WOS:000566745600005 | Rights: | The Author(s), 2020. Published by Cambridge University Press. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited. | Category: | A1 | Type: | Journal Contribution | Validations: | ecoom 2021 |
Appears in Collections: | Research publications |
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