Clinics in Mother and Child Health

Abstract

Cultural Perspective from Middle Eastern Countries on the Ethics of Involving Children with Cancer in Research

Arabiat DH

This paper is concerned with ethical issues that have to be considered when conducting research with children in nonwestern cultures. It sets the discussion in the context of current debate about researching children with cancer and explores the extent to which these ethical issues are similar to, or different from Western countries. A number of culturally sensitive issues encountered with children in Jordan while investigating their psychological wellbeing is discussed. These issues are discussed with relation to obtaining informed consent from children for participation in the research; issues of assuring confidentiality; and assuring no harm. Concern with children’s rights has been extended to the question is it ethical to provide full information about the study for children who were not informed about their cancer diagnosis. Such issues are often overlooked and for future studies with children acknowledging these issues can help provide a basis for reasoning and direct actions. The ethical issues that are discussed in this paper exemplify that exploring children’s psychological distress in a culture where this is not recognized provides the researcher with a number of concerns; the communication approaches of illness diagnosis, the wisdom of their elders, and the importance of their family which may result in reluctance to show emotion or to question decisions made on their behalf. The necessity for researchers to take an ethical stance in such cases may encounter difficulty and a number of issues had to be addressed and sorted case by case.