STARDIT/ Public Involvement in Global Genomics Research: A Scoping Review

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Description: A scoping review of 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.
Dates

State completed
Start 2017-11-01
End 2019-04-09
Form updated 2023-06-29

Report authors
Jack Nunn (link)
0000-0003-0316-3254
jack.nunn@scienceforall.world
Report creation
Location
Australia
Other IDs
PMID: 31024880
PMCID: PMC6467093
DOI: 10.3389/fpubh.2019.00079
Aims
detailed analysis or review of the features, methods, and impacts of public involvement occurring in human genomics research projects worldwide
Keywords
genomics
scoping review
public involvement
Category
research

Inputs

individual

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)
group of individuals

other authors



Task: checked search method, checked data extraction, checked analysis, checked data synthesis, feedback on manuscript,
Compensation: volunteer
group of individuals

Staff from Global Alliance for Genomics and Health (GA4GH)



Task: Provided up-to-date databases, gave feedback on search strategy
Compensation: volunteer
time


250 hours


PhD student time

Outputs and impacts

publication/report/document

Peer-reviewed scoping review (link)



Impact: viewed over 10000 times (as of 2022.12.01)
knowledge translation

citations



Impact: cited by 26 authors (as of 2022.12.01)
knowledge translation

elements of search method replicated



Impact: Search method used to inform future scoping reviews and UNESCO documents
publication/report/document

Learning from this review informed the co-creation of 'Standardised Data on Initiatives – STARDIT: Beta Version' (link)