ArticleJournal of empirical research on human research ethics : JERHRE2015
Sweat, Skepticism, and Uncharted Territory: A Qualitative Study of Opinions on Data Sharing Among Public Health Researchers and Research Participants in Mumbai, India.
Article in Journal of empirical research on human research ethics : JERHRE, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 1 of them a synthesis that pooled it.
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Who cites it
25 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings.Journal of empirical research on human research ethics : JERHRE · 2015Pooled it
- Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach.Journal of empirical research on human research ethics : JERHRE · 2026Article
- Identifying the motivators, benefits and barriers to sharing participant-level data and samples: results from an international online survey of acute febrile illness cohort teams.BMC medical ethics · 2026Article
- Unmasking the ethical dimensions of data-sharing in health research: perspectives from researchers at a public university in Uganda.BMC medical ethics · 2025Article
- Stakeholders' perceptions of personal health data sharing: A scoping review.PLOS digital health · 2024Article
- Preferences on Governance Models for Mental Health Data: Qualitative Study With Young People.JMIR formative research · 2024Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders' perspectives.BMJ global health · 2023Article
- Building public trust and confidence in secondary use of health data for healthcare improvement and research: a qualitative study pre-protocol.HRB open research · 2023Article
- "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.PLOS global public health · 2023Article
- Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore.Journal of personalized medicine · 2021Article
- What empirical research has been undertaken on the ethics of clinical research in India? A systematic scoping review and narrative synthesis.BMJ global health · 2021Article
- Construction and Piloting of Attitude Towards Research Participation Scale for University Students.Psychology research and behavior management · 2021Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand.BMC medical ethics · 2018Article
- Sharing public health data and information across borders: lessons from Southeast Asia.Globalization and health · 2018Article
- Sharing health research data - the role of funders in improving the impact.F1000Research · 2018Article
- Knowledge translation for public health in low- and middle- income countries: a critical interpretive synthesis.Global health research and policy · 2018Review
- Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya: Views on Fair Process for Informed Consent, Access Oversight, and Community Engagement.Journal of empirical research on human research ethics : JERHRE · 2015Article
- Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review.Journal of empirical research on human research ethics : JERHRE · 2015Article
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
Efforts to internalize data sharing in research practice have been driven largely by developing international norms that have not incorporated opinions from researchers in low- and middle-income countries. We sought to identify the issues around ethical data sharing in the context of research involving women and children in urban India. We interviewed researchers, managers, and research participants associated with a Mumbai non-governmental organization, as well as researchers from other organizations and members of ethics committees. We conducted 22 individual semi-structured interviews and involved 44 research participants in focus group discussions. We used framework analysis to examine ideas about data and data sharing in general; its potential benefits or harms, barriers, obligations, and governance; and the requirements for consent. Both researchers and participants were generally in favor of data sharing, although limited experience amplified their reservations. We identified three themes: concerns that the work of data producers may not receive appropriate acknowledgment, skepticism about the process of sharing, and the fact that the terrain of data sharing was essentially uncharted and confusing. To increase data sharing in India, we need to provide guidelines, protocols, and examples of good practice in terms of consent, data preparation, screening of applications, and what individuals and organizations can expect in terms of validation, acknowledgment, and authorship.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.