Ethical challenges in IR

As with all research, ethical and scientific integrity is an essential good practice in IR. In the context of IR, there may be specific ethical dilemmas because the studies are often conducted within the routine activities of the health system, and without the level of control associated with most clinical research studies especially clinical trials. The autonomy and understanding of volunteers are likely to be limited if the studies are conducted in high-burden and vulnerable populations with limited access to health care. In some IR projects, individual observations or personal interviews risk generating psychological distress when sensitive issues are discussed or recorded, or if there are any potential breaches of confidentiality.27

Ethical issues associated with IR can generate controversy. This may affect both quantitative and qualitative research approaches, across a broad range of disciplines such as epidemiology, statistics, anthropology, sociology, health economics, health promotion and education, political science and others. Although research protocols are applied in real-life settings there are nevertheless inherent ethical pitfalls and risks.

For example, participants in IR may be burdened by the loss of privacy, time spent in interviews and examinations, and by possible adverse psychological effects. Such risks can be minimized by careful attention to study procedures, limiting the length of questionnaires or additional clinical examination and sampling, and considerate timing of observations. IR also poses specific ethical challenges, given that it frequently requires collection of information from a large number of subjects in diverse situations, and involving a broad range of stakeholders.

Research ethics committees are often more familiar with the protocols developed for more mainstream clinical studies and trials. Study protocols developed by IR teams should inter alia take special note to address issues such as power relationships, illiteracy, disruption of routine health services, inequitable selection of participants, raising expectation of participants and over-burdening staff in the health system with research responsibilities, diverting their time and efforts from health care provision.

TDR Implementation research toolkit

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