Consent as a compositional act – a framework that provides clarity for the retention and use of data
Abstract Background Informed consent is one of the key principles of conducting research involving humans. When research participants give consent, they perform an act in which they utter, write or otherwise provide an authorisation to somebody to do something. This paper proposes a new understandin...
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| Format: | Article |
| Language: | English |
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BMC
2024-03-01
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| Series: | Philosophy, Ethics, and Humanities in Medicine |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s13010-024-00152-0 |
| _version_ | 1797266667692097536 |
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| author | Minerva C. Rivas Velarde Christian Lovis Marcello Ienca Caroline. Samer Samia Hurst |
| author_facet | Minerva C. Rivas Velarde Christian Lovis Marcello Ienca Caroline. Samer Samia Hurst |
| author_sort | Minerva C. Rivas Velarde |
| collection | DOAJ |
| description | Abstract Background Informed consent is one of the key principles of conducting research involving humans. When research participants give consent, they perform an act in which they utter, write or otherwise provide an authorisation to somebody to do something. This paper proposes a new understanding of the informed consent as a compositional act. This conceptualisation departs from a modular conceptualisation of informed consent procedures. Methods This paper is a conceptual analysis that explores what consent is and what it does or does not do. It presents a framework that explores the basic elements of consent and breaks it down into its component parts. It analyses the consent act by first identifying its basic elements, namely: a) data subjects or legal representative that provides the authorisation of consent; b) a specific thing that is being consented to; and c) specific agent(s) to whom the consent is given. Results This paper presents a framework that explores the basic elements of consent and breaks it down into its component parts. It goes beyond only providing choices to potential research participants; it explains the rationale of those choices or consenting acts that are taking place when speaking or writing an authorisation to do something to somebody. Conclusions We argue that by clearly differentiating the goals, the procedures of implementation, and what is being done or undone when one consent, one can better face the challenges of contemporary data-intensive biomedical research, particularly regarding the retention and use of data. Conceptualising consent as a compositional act enhances more efficient communication and accountability and, therefore, could enable more trustworthy acts of consent in biomedical science. |
| first_indexed | 2024-04-25T01:04:20Z |
| format | Article |
| id | doaj.art-e69f207042c74802851dbeb30fdf7f26 |
| institution | Directory Open Access Journal |
| issn | 1747-5341 |
| language | English |
| last_indexed | 2024-04-25T01:04:20Z |
| publishDate | 2024-03-01 |
| publisher | BMC |
| record_format | Article |
| series | Philosophy, Ethics, and Humanities in Medicine |
| spelling | doaj.art-e69f207042c74802851dbeb30fdf7f262024-03-10T12:19:27ZengBMCPhilosophy, Ethics, and Humanities in Medicine1747-53412024-03-0119111010.1186/s13010-024-00152-0Consent as a compositional act – a framework that provides clarity for the retention and use of dataMinerva C. Rivas Velarde0Christian Lovis1Marcello Ienca2Caroline. Samer3Samia Hurst4Geneva School of Health Science, University of Applied Sciences Geneva HES-SODivision of Medical Information Sciences, Department of Radiology and Medical Informatics, University Hospital of GenevaInstitute for Ethics and History of Medicine, Department of Clinical Medicine, School of Medicine and Health, Technical University of MunichDivision of Clinical Pharmacology and Toxicology, Geneva University HospitalsInstitute for Ethics, History, and the Humanities (iEH2), Faculty of Medicine, University of GenevaAbstract Background Informed consent is one of the key principles of conducting research involving humans. When research participants give consent, they perform an act in which they utter, write or otherwise provide an authorisation to somebody to do something. This paper proposes a new understanding of the informed consent as a compositional act. This conceptualisation departs from a modular conceptualisation of informed consent procedures. Methods This paper is a conceptual analysis that explores what consent is and what it does or does not do. It presents a framework that explores the basic elements of consent and breaks it down into its component parts. It analyses the consent act by first identifying its basic elements, namely: a) data subjects or legal representative that provides the authorisation of consent; b) a specific thing that is being consented to; and c) specific agent(s) to whom the consent is given. Results This paper presents a framework that explores the basic elements of consent and breaks it down into its component parts. It goes beyond only providing choices to potential research participants; it explains the rationale of those choices or consenting acts that are taking place when speaking or writing an authorisation to do something to somebody. Conclusions We argue that by clearly differentiating the goals, the procedures of implementation, and what is being done or undone when one consent, one can better face the challenges of contemporary data-intensive biomedical research, particularly regarding the retention and use of data. Conceptualising consent as a compositional act enhances more efficient communication and accountability and, therefore, could enable more trustworthy acts of consent in biomedical science.https://doi.org/10.1186/s13010-024-00152-0Informed consentDynamic consentFrameworkInformation TechnologyTrust |
| spellingShingle | Minerva C. Rivas Velarde Christian Lovis Marcello Ienca Caroline. Samer Samia Hurst Consent as a compositional act – a framework that provides clarity for the retention and use of data Philosophy, Ethics, and Humanities in Medicine Informed consent Dynamic consent Framework Information Technology Trust |
| title | Consent as a compositional act – a framework that provides clarity for the retention and use of data |
| title_full | Consent as a compositional act – a framework that provides clarity for the retention and use of data |
| title_fullStr | Consent as a compositional act – a framework that provides clarity for the retention and use of data |
| title_full_unstemmed | Consent as a compositional act – a framework that provides clarity for the retention and use of data |
| title_short | Consent as a compositional act – a framework that provides clarity for the retention and use of data |
| title_sort | consent as a compositional act a framework that provides clarity for the retention and use of data |
| topic | Informed consent Dynamic consent Framework Information Technology Trust |
| url | https://doi.org/10.1186/s13010-024-00152-0 |
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