ethics-guideline research-ethics research-with-people-with-disabilities
“The purpose of the guidance The purpose is to assist researchers and Research Ethics Committees by offering guidance in relation to good practice in research involving people with disabilities.4 The guidance may also be of interest to research sponsors and funders, those involved in research governance, people with disabilities and disability organisations. Ethical responsibilities apply throughout the research process. Applying ethical guidance in individual research projects is an ongoing matter of judgment and good research practice. Researchers cannot simply consider their ethical responsibilities as fulfilled once ethical approval for a research project has been obtained. Issues arise during fieldwork that still have ethical implications so that ‘permission from an ethics committee to proceed with the research is just the beginning of a process of constant self-monitoring by the researcher’ (Rolph, 1998, p.135, citing Ristock and Pennell, 1996). Wiles et al. (2004) state, that, for instance, in relation to issues of informed consent, there are no simple solutions that can be applied universally to resolve all ethical dilemmas. Rather, researchers need at all stages of the research process to be mindful of the various issues that can arise in the context of their individual research projects. Issues can relate to:
1. the needs of participants
1. ensuring ongoing assent or consent
1. handling relationships that develop during the research process
1. unanticipated, distressing emotions
1. unexpected revelations” ([National Disability Authority, 2009, p. 13](zotero://select/groups/4907410/items/LT3RKDKU)) ([pdf](zotero://open-pdf/groups/4907410/items/HY72W4CC?page=15))