title: Ethical dilemmas of social science research on AIDS and orphanhood in Western Kenya.
abstract: This paper is based on the experiences drawn from a long-term social science research programme on the impact of the AIDS pandemic on orphanhood in western Kenya. It discusses the ethical dilemma of maintaining a delicate balance between research ethics, the expectations of the study population and negotiating the community's vested interests in a health related research project in a low-income society. I argue that informed consent and the intended benefits of the study to the participants continue to be major challenges facing the justification of social research with people affected by or living with AIDS in low-income societies. The paper underscores the importance of community feedback sessions as a way of enhancing chances of acceptability of research efforts and obtaining informed consent. It further shows how community feedback sessions contribute to local knowledge of the problem being studied, creating opportunities for advocacy. This discussion adds to the existing ethical debate on the wider contexts within which research on vulnerable people affected by AIDS is conducted by arguing that research practice is inseparable from epistemological concerns of knowledge production. I suggest that ethnographers should enhance efforts to innovatively design action research projects to serve the twin purposes of data collection and deal with ethical challenges that are experienced when doing long-term research on vulnerable groups.
authors.affiliation: Maseno University, Sociology and Anthropology, Kisumu-Busia Road, Kisumu, Nyanza, Kenya. eonyambedha@yahoo.co.uk
authors.forename: Erick Otieno
authors.initials: EO
authors.lastname: Nyambedha
mesh_terms: D000163:Acquired Immunodeficiency Syndrome; D000293:Adolescent; D000328:Adult; D000884:Anthropology, Cultural; D002648:Child; D054540:Child, Orphaned; D002675:Child, Preschool; D032984:Ethics, Research; D005260:Female; D006801:Humans; D007258:Informed Consent / Q000941:ethics* / Q000523:psychology; D007630:Kenya; D008297:Male; D012106:Research; D035842:Research Subjects / Q000523:psychology; D012942:Social Sciences / Q000941:ethics*; D012944:Social Support; D035862:Vulnerable Populations / Q000523:psychology*