Duncan Rony E, Drew Sarah E, Hodgson Jan, Sawyer Susan M
Centre for Adolescent Health, Royal Children's Hospital, 2 Gatehouse St, Parkville, Victoria 3052, Australia.
Soc Sci Med. 2009 Dec;69(11):1691-9. doi: 10.1016/j.socscimed.2009.09.001. Epub 2009 Sep 24.
Ethical issues arise in all research settings. However, qualitative research with young people raises specific dilemmas that warrant special attention. In this paper we describe an ethical dilemma that arose during a qualitative project we carried out exploring self-management of chronic illness in adolescents. A participant disclosed details of poor adherence with medication, which had significant health implications. Prior to this disclosure he had been assured of confidentiality and thus we found ourselves unsure of how to proceed. Here, we analyse the case in detail, highlighting the ethically important moments, the options for action and the implications of these. We do this with the aim of facilitating ethical mindfulness and thus, ultimately, ethical research practice. As a backdrop to this case we consider the broader ethical context. We find that qualitative research is susceptible to ethical dilemmas because: (1) it is not always possible to predict all possible questions and responses; (2) the nature of the relationship between researchers and participants is amenable to sensitive disclosures; (3) the process of qualitative research can make it difficult for participants to voice concerns or withdraw; and (4) participants' identities are generally known to researchers, complicating boundary issues. Research with young people is susceptible to ethical dilemmas because: (1) young people have limited life experience; (2) consent is often required from both young people and parents; (3) issues of competence can complicate assumptions about informed consent; and (4) the power differential between researchers and participants is significant. When combining qualitative research methods and young participants, the scope for ethical risk is thus substantial.
伦理问题在所有研究环境中都会出现。然而，针对年轻人的定性研究引发了一些特殊的困境，值得特别关注。在本文中，我们描述了在一项定性研究项目中出现的伦理困境，该项目旨在探索青少年慢性病的自我管理。一名参与者透露了服药依从性差的细节，这对健康有重大影响。在透露这些信息之前，他已得到保密保证，因此我们发现自己不确定该如何继续。在此，我们详细分析该案例，突出其中在伦理上重要的时刻、行动选项及其影响。我们这样做的目的是促进伦理意识，从而最终推动符合伦理的研究实践。作为该案例的背景，我们考虑更广泛的伦理背景。我们发现定性研究容易陷入伦理困境，原因如下：（1）并非总能预测所有可能的问题和回答；（2）研究人员与参与者之间的关系性质便于敏感信息的披露；（3）定性研究过程可能使参与者难以表达担忧或退出；（4）研究人员通常知道参与者的身份，这使边界问题变得复杂。针对年轻人的研究容易陷入伦理困境，原因如下：（1）年轻人生活经验有限；（2）通常需要年轻人和家长双方的同意；（3）能力问题可能使关于知情同意的假设变得复杂；（4）研究人员与参与者之间的权力差异很大。因此，当结合定性研究方法和年轻参与者时，伦理风险的范围相当大。
