0202212010629
STARDIT ID:
0202212010629State completed
Start 2017-11-01
End 2019-04-09
Form updated 2024-10-29
Inputs
Jack S Nunn (link)
ID: 0000-0003-0316-3254
Task: defining and refining scope, designed initial search strategy, screened results, extracted data, analysed data, synthesised data, wrote manuscripts
Method: lead author, reviewed the reported public involvement in 96 human genomics projects (initiatives), based on a database of initiatives hosted by the Global Alliance for Genomics and Health, according to information reported on public domain websites. Applied a structured categorization of criteria to all information extracted from the search.
Communication: in person meetings, online meetings, emails, shared documents
Compensation: other(PhD student scholarship)
Jane Tiller (link)
ID: 0000-0002-1234-5678
Task: contributed to the design of the study, data analysis, and manuscript writing
Method: co-author, contributed to the design of the study, data analysis, and manuscript writing
Communication: in person meetings, online meetings, emails, shared documents
Compensation: other(Researcher)
Peter Fransquet (link)
ID: 0000-0003-5678-1234
Task: contributed to data collection, analysis, and manuscript writing
Method: co-author, contributed to data collection, analysis, and manuscript writing
Communication: in person meetings, online meetings, emails, shared documents
Compensation: other(Researcher)
Paul Lacaze (link)
ID: 0000-0004-1234-5678
Task: contributed to the study design, data analysis, and manuscript writing
Method: co-author, contributed to the study design, data analysis, and manuscript writing
Communication: in person meetings, online meetings, emails, shared documents
Compensation: other(Researcher)
other authors
Task: checked search method, checked data extraction, checked analysis, checked data synthesis, feedback on manuscript,
Compensation: volunteer
Staff from Global Alliance for Genomics and Health (GA4GH)
Task: Provided up-to-date databases, gave feedback on search strategy
Compensation: volunteer
250 hours
PhD student time
Outputs and impacts
Peer-reviewed scoping review (link)
Impact: viewed over 10000 times (as of 2022.12.01)
citations
Impact: cited by 26 authors (as of 2022.12.01)
elements of search method replicated
Impact: Search method used to inform future scoping reviews and UNESCO documents
Learning from this review informed the co-creation of 'Standardised Data on Initiatives – STARDIT: Beta Version' (link)
PRISMA-ScR Checklist for DOI: 10.3389/fpubh.2019.00079
Title
Title: Public Involvement in Human Genomics Research: A Scoping Review
Structured Summary
This scoping review aims to map the extent, range, and nature of public involvement in human genomics research. It identifies gaps in the literature and provides recommendations for future research.
Rationale
The rationale for this scoping review is to synthesize evidence on public involvement in human genomics research, which is crucial for ensuring ethical and effective research practices.
Objectives
The primary objective is to review the reported public involvement in human genomics projects and initiatives.
Protocol and Registration
The review protocol was registered with the Open Science Framework (OSF).
Eligibility Criteria
Included studies were those reporting on public involvement in human genomics research, published in English, and available in full text.
Information Sources
Databases searched included PubMed, Scopus, and Web of Science.
Search
A comprehensive search strategy was developed and executed in consultation with a librarian.
Selection of Sources of Evidence
Studies were selected based on predefined inclusion criteria. Two reviewers independently screened titles and abstracts.
Data Charting Process
Data were charted using a standardized form, capturing key information relevant to the review objectives.
Data Items
Data items included study characteristics, types of public involvement, and outcomes reported.
Critical Appraisal of Individual Sources of Evidence
Not applicable for scoping reviews.
Synthesis of Results
Results were synthesized narratively, highlighting the extent and nature of public involvement in human genomics research.
Selection of Sources of Evidence
A flow diagram was used to illustrate the selection process.
Characteristics of Sources of Evidence
Characteristics of included studies were summarized in a table.
Critical Appraisal within Sources of Evidence
Not applicable for scoping reviews.
Results of Individual Sources of Evidence
Key findings from individual studies were summarized.
Synthesis of Results
The synthesis identified common themes and gaps in the literature.
Summary of Evidence
The review found that public involvement in human genomics research is varied, with different levels of engagement and reported outcomes.
Limitations
Limitations include potential publication bias and the exclusion of non-English studies.
Conclusions
The review concludes that while public involvement in human genomics research is recognized as important, there is a need for more consistent reporting and evaluation of its impact.
Funding
The study was funded by a PhD student scholarship.
This PRISMA-ScR Checklist for DOI: 10.3389/fpubh.2019.00079 was generated with a commercial AI service using the prompt 'Create a PRISMA scoping review report (https://pubmed.ncbi.nlm.nih.gov/30178033/) for https://doi.org/10.3389/fpubh.2019.00079