Nyambedha Erick Otieno
Maseno University, Sociology and Anthropology, Kisumu-Busia Road, Kisumu, Nyanza, Kenya.
Soc Sci Med. 2008 Sep;67(5):771-9. doi: 10.1016/j.socscimed.2008.02.024. Epub 2008 Apr 9.
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.
本文基于一项长期社会科学研究项目的经验，该项目关注艾滋病流行对肯尼亚西部孤儿状况的影响。它探讨了在研究伦理、研究对象的期望以及在低收入社会的健康相关研究项目中协调社区既得利益之间保持微妙平衡所面临的伦理困境。我认为，知情同意以及研究对参与者的预期益处，仍然是低收入社会中对受艾滋病影响或感染艾滋病的人群进行社会研究正当性的主要挑战。本文强调了社区反馈会议的重要性，它是提高研究工作可接受性并获得知情同意的一种方式。它还进一步展示了社区反馈会议如何有助于增进对所研究问题的当地认识，创造宣传机会。通过论证研究实践与知识生产的认识论关切不可分割，这一讨论为关于开展艾滋病影响下弱势群体研究的更广泛背景的现有伦理辩论增添了内容。我建议人种志学者应加大力度创新设计行动研究项目，以实现数据收集的双重目的，并应对在对弱势群体进行长期研究时遇到的伦理挑战。
