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
Bibliographic Data
| ID | 12807293 |
|---|---|
| Authors | Phaik Yeong Cheah (0000-0001-6327-3266, Mahidol University, corresponding author), 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) |
| Year | 2015 |
| Volume | 10 |
| Issue | 3 |
| Pages | 278-289 |
| Publication date | 2015-07-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Journal of Empirical Research on Human Research Ethics (JOURNAL) |
| Journal identifiers | ISSN: 1556-2646 • E-ISSN: 1556-2654 |
| Publisher | SAGE Publishing (PUBLISHER • US) |
| DOI | 10.1177/1556264615592388 |
| PMID | 26297749 |
| PMCID | PMC4547202 |
| OpenAlex | W2133138483 |
| Language | EN |
| Citations received | 14 |
| References cited | 33 |
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
"How about me giving blood for the Covid vaccine and not being able to get vaccinated?" A cognitive interview study on understanding of and agreement with broad consent for future use of data and samples in Colombia and Nicaragua
Barriers impeding research data sharing on chronic disease prevention among the older adults in low-and middle-income countries
What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives
Research data management and sharing awareness, attitude, and behavior of academic researchers
Attitudinal, Normative, and Resource Factors Affecting Communication Scholars’ Data Sharing
Establishing best practices guidelines for collaborative research in global surgery
Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research
Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya
Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings
Sweat, Skepticism, and Uncharted Territory
Trust, Respect, and Reciprocity
Addressing Global Data Sharing Challenges
Sharing Public Health Research Data
Good data relations key to Indigenous research sovereignty
Using the framework method for the analysis of qualitative data in multi-disciplinary health research
Blueprint for a deliberative public forum on biobanking policy
Sweat, Skepticism, and Uncharted Territory
Trust, Respect, and Reciprocity
Assessing the Public's Views in Research Ethics Controversies
Sharing Public Health Research Data
Developing Ethical Practices for Public Health Research Data Sharing in South Africa
Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya
Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research
A General Inductive Approach for Analyzing Qualitative Evaluation Data
Beginning community engagement at a busy biomedical research programme
| Unique citing works | 14 |
|---|---|
| Citations per year | 1,27 |
| Citation span | 2015 - 2025 (11) |
| Citation velocity | recent |
| Highly cited | No |
| Citation types | Neutral: 13 |