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.
Highlights
With an estimated population of 1.2 billion, a history of science going back at least three millennia, a patchwork of groups at different stages of the demographic, epidemiologic, and nutrition transitions, and highly developed educational and health sectors, India is a major producer of biomedical research data
The practice of data sharing for biomedical research has been uncommon in India
Within the remit of the collaborative study, we aimed to interview people drawn from two pools: employees or participants in research conducted by SNEHA, augmented by researchers from other organizations with experience of either data sharing or the ethical issues around it
Summary
With an estimated population of 1.2 billion, a history of science going back at least three millennia, a patchwork of groups at different stages of the demographic, epidemiologic, and nutrition transitions, and highly developed educational and health sectors, India is a major producer of biomedical research data. Against this backdrop, the Society for Nutrition, Education and Health Action (SNEHA), a non-governmental organization, works to improve health in urban informal settlements (slums) in Mumbai, India. Used for program evaluation, data are collected from women and children in informal settlements They describe assets, education, family planning, maternity experience, use of health care providers, agency, mortality and morbidity, nutrition, and violence against women and children. As such, they are of interest to other non-governmental organizations, government agencies, activists, and social and biomedical scientists
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