Respecting Autonomy Over Time: Policy and Empirical Evidence on Re-Consent in Longitudinal Biomedical Research
Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger re-consent and what impact a re-consent exercise has on partic...
| Authors: | ; ; ; ; |
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| Format: | Electronic Article |
| Language: | English |
| Check availability: | HBZ Gateway |
| Journals Online & Print: | Drawer...
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| Fernleihe: | Fernleihe für die Fachinformationsdienste |
| Published: |
Wiley-Blackwell
[2016]
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| In: |
Bioethics
Year: 2016, Volume: 30, Issue: 3, Pages: 210-217 |
| IxTheo Classification: | NCH Medical ethics |
| Further subjects: | B
Policy
B Consent B Biobank B Autonomy B re-consent |
| Online Access: |
Presumably Free Access Volltext (Verlag) Volltext (doi) |
| Summary: | Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger re-consent and what impact a re-consent exercise has on participants and the research project. This article examines applicable policy statements and literature for the prevailing arguments for and against re-consent in relation to longitudinal cohort studies, tissue banks and biobanks. Examples of re-consent exercises are presented, triggers and non-triggers for re-consent discussed and the conflicting attitudes of commentators, participants and researchers highlighted. We acknowledge current practice and argue for a greater emphasis on ‘responsive autonomy,’ that goes beyond a one-time consent and encourages greater communication between the parties involved. A balance is needed between respecting participants' wishes on how they want their data and samples used and enabling effective research to proceed. |
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| ISSN: | 1467-8519 |
| Contains: | Enthalten in: Bioethics
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| Persistent identifiers: | DOI: 10.1111/bioe.12165 |