Ethical dilemmas in researching sensitive issues online : lessons from the study of British disability dissent networks

This paper presents an unconventional approach to the resolution of the key ethical dilemmas raised by the study of politically charged personal content posted on social media. In particular, this study suggests that Internet research ethics should remain informed by the disciplinary perspectives of those who study online communities. Hence, Internet scholars must build on established ethical practices from their respective disciplines in such a way as to address these 'human-centred' ethical issues. A 'medium-cloaked' strategy towards data anonymization was adopted for this study of the comments posted on the Facebook pages of UK disability rights groups. Key themes were typically conveyed without the disclosure of personally identifiable information and direct quotes were only used if they could not be located using a search engine. The rationale for such an approach is elucidated in order to identify the limitations in the ways in which such ethical issues are dealt with in existing guidelines in this area. The paper suggests that the automatic categorization of disabled people and others experiencing disadvantage as 'vulnerable groups' in many of these protocols might further disempower these stakeholders through the omission of their personal stories from relevant scholarship. A more nuanced approach towards the protection of user privacy is advocated; one that allows for the use of direct quotes when it is unlikely to prove harmful to the user but also sets out to provide the maximum level of anonymity possible for those who divulge sensitive information in these semi-public spaces.