Guidance for ensuring fair and ethical broad consent for future use. A scoping review protocol
| Autor: | Laura Merson, Regina Gilyan, Sayali Arvind Chavan, Lauren Maxwell, Robert F Terry, Abha Saxena |
|---|---|
| Rok vydání: | 2021 |
| Předmět: |
Knowledge management
benefit sharing data sharing Best practice Sample (statistics) community engagement 0603 philosophy ethics and religion General Biochemistry Genetics and Molecular Biology Study Protocol 03 medical and health sciences 0302 clinical medicine Humans 030212 general & internal medicine General Pharmacology Toxicology and Pharmaceutics Protocol (science) Informed Consent General Immunology and Microbiology Community engagement business.industry broad consent for future use Articles 06 humanities and the arts General Medicine Grey literature Transparency (behavior) Data sharing Review Literature as Topic Systematic review scoping review 060301 applied ethics business Psychology |
| Zdroj: | F1000Research |
| ISSN: | 2046-1402 |
| DOI: | 10.12688/f1000research.51312.1 |
| Popis: | Introduction: Broad consent for future use is the reuse of data and/or samples collected by a study by researchers who may not be affiliated with the original study team for purposes that may differ from the objectives of the original study. Sharing participant-level data and samples collected from research participants facilitates reuse and transparency and can accelerate drug or vaccine development, research findings, and translation. Data reuse and synthesis help prevent unnecessary research, thereby respecting research participants time and efforts and building their trust in the research process. Despite these myriad benefits, data and sample sharing represent a significant investment of time for the team that collected the data or samples, and may present additional risks for research participants, including that of re-identifiability and incidental findings, or for the source community. This scoping review will summarize existing guidance on broad consent for future use and highlight evidence gaps related to the ethical, equitable implementation of broad consent for future use. Methods and analysis: We will apply the Arskey and O’Malley scoping review methodology and best practice as outlined in the Joanna Briggs scoping review guidelines. The research questions have been identified through a literature review and consultation with subject-matter experts. The systematic search will be conducted in three databases using a tailored search strategy. We will search the reference lists of included articles or related systematic reviews for additional citations. The title-abstract and full text screening and charting the data will be conducted independently by two reviewers. Discrepancies will be resolved by a third reviewer. Results will be summarized in narrative form. Ethics and dissemination: This scoping review summarizes findings from existing publications and grey literature rather than primary data and, as such, does not require ethics review. Findings will be disseminated through an open access publication and webinar. |
| Databáze: | OpenAIRE |
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