Ethics, Informed Consent, Confidentiality and Anonymity

When undertaking research, researchers should be conscious regarding the protection of participants from harm or loss, and must implement measures to protect their psychological well-being and dignity at all times (Brooks et al., 2014). As such researchers have an obligation to minimize risk and harm, and maximise benefits, when conducting research on human participants; to this end they must take significant precautions with vulnerable populations, to ensure the burdens and benefits of research are distributed fairly (Shamoo and Resnik, 2015). In terms of research into autism, it should be acknowledged this type of research poses significant ethical challenges, as there is a likely risk …show more content…
Aligned to this are issues surrounding ontological and epistemological assumptions, as qualitative research in particular, concerns the subjective world-view, alongside views about agency and human nature (Sikes, 2004). The process of reflexivity allows researchers to address these issues and accept their influence during the research process, whilst engaging with their own theoretical framework (O’Reilly and Parker, 2014). Part of this ongoing exercise involves researcher's reflecting upon their own assumptions, biases, positioning, and behaviour; as these factors shape the research process (Finlay and Gough, 2003; Willig, 2001). Additionally, the action of thinking reflexively also demonstrates an acknowledgement of the situated nature of research and the degree to which findings can be deemed trustworthy, reliable and valid (Finlay and Gough, 2003). Disability research is particularly vulnerable to accusations of bias and subjectivity, as historically research in this area has been dominated by academic or medical interests (Florian, 2007). In this …show more content…
Confidentiality is linked to, but distinct from anonymity, which relates to not disclosing the identities of participants and the use of pseudonyms (Crow and Wiles, 2008), however assuring this can be difficult, as people with learning disabilities may wish to take ownership of their narrative and contribution (Swain et al., 1998). Additionally, whilst researchers try to mitigate this risk by implementing specific processes to anonymise participants, confidentiality cannot always be assured, as findings may be extended to audiences such as the local community, who may recognise participants (Crow and Wiles, 2008). Consequently, researchers can advise they will seek to ensure anonymity and confidentiality as far as is reasonably possible, but cannot offer absolute assurances (Wiles et al.,