Perceived Benefits, Harms, and Views About How to Share Data Responsibly

A Qualitative Study of Experiences With and Attitudes Toward Data Sharing Among Research Staff and Community Representatives in Thailand

Dados Bibliográficos

ID12807293
AutoresPhaik Yeong Cheah (0000-0001-6327-3266, Mahidol University, autor correspondente), Decha Tangseefa (0000-0002-0329-6471, Thammasat University), Aimatcha Somsaman (Mahidol University), Tri Chunsuttiwat (Mahidol University), Francois Nosten (0000-0002-7951-0745, Mahidol University), Nicholas Day (0000-0003-2309-1171, Mahidol University), Susan Bull (0000-0002-1779-528X, University of Oxford), Michael Parker (0000-0002-7054-4711), Michael J Parker (0000-0003-4739-5217, University of Oxford)
Ano2015
Volume10
Fascículo3
Páginas278-289
Data de publicação2015-07-01
Peer ReviewedSim
Open AccessSim
TipoARTICLE
PeriódicoJournal of Empirical Research on Human Research Ethics (JOURNAL)
Identificadores do periódicoISSN: 1556-2646 • E-ISSN: 1556-2654
EditoraSAGE Publishing (PUBLISHER • US)
DOI10.1177/1556264615592388
PMID26297749
PMCIDPMC4547202
OpenAlexW2133138483
IdiomaEN
Citações recebidas14
Referências citadas33

The Thailand Major Overseas Programme coordinates large multi-center studies in tropical medicine and generates vast amounts of data. As the data sharing movement gains momentum, we wanted to understand attitudes and experiences of relevant stakeholders about what constitutes good data sharing practice. We conducted 15 interviews and three focus groups discussions involving 25 participants and found that they generally saw data sharing as something positive. Data sharing was viewed as a means to contribute to scientific progress and lead to better quality analysis, better use of resources, greater accountability, and more outputs. However, there were also important reservations including potential harms to research participants, their communities, and the researchers themselves. Given these concerns, several areas for discussion were identified: data standardization, appropriate consent models, and governance

Accountability · Alternative medicine · Business · Corporate governance · Data collection · Data governance · Data quality · Data sharing · Focus group · Political science · Public relations · Quality (philosophy · Social science · Sociology · Standardization · Survey data collection · Ethics in Clinical Research · Genetics, Bioinformatics, and Biomedical Research · Law · Medicine · Psychology · Marketing