title: 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.
abstract: 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.
authors: Mahidol University, Bangkok, Thailand University of Oxford, UK phaikyeong@tropmedres.ac.
authors: Phaik Yeong
authors: PY
authors: Cheah
authors: Thammasat University, Thailand.
authors: Decha
authors: D
authors: Tangseefa
authors: Mahidol University, Bangkok, Thailand.
authors: Aimatcha
authors: A
authors: Somsaman
authors: Mahidol University, Bangkok, Thailand.
authors: Tri
authors: T
authors: Chunsuttiwat
authors: Mahidol University, Bangkok, Thailand University of Oxford, UK.
authors: François
authors: F
authors: Nosten
authors: Mahidol University, Bangkok, Thailand University of Oxford, UK.
authors: Nicholas P J
authors: NP
authors: Day
authors: University of Oxford, UK.
authors: Susan
authors: S
authors: Bull
authors: University of Oxford, UK.
authors: Michael
authors: M
authors: Parker
mesh_terms: D001290:Attitude; D035843:Biomedical Research; D003299:Cooperative Behavior; D003625:Data Collection; D003906:Developing Countries; D005260:Female; D017144:Focus Groups; D006801:Humans; D033181:Information Dissemination / Q000941:ethics*; D008297:Male; D010465:Perception; D036301:Qualitative Research; D012108:Research Personnel; D035842:Research Subjects; D012111:Residence Characteristics; D012941:Social Responsibility; D013785:Thailand
keywords: Thailand; collaboration; consent; data sharing; research ethics