Informed consent, confidentiality and anonymity

Informed consent means that participants enter the research project voluntarily, understanding the nature of the study and the danger and obligations that are involved (Bogdan & Biklen, 2007). It is an ethical principle that implies a responsibility on the part of the researcher to ‘strive to ensure that those involved as participants in research not only agree and consent to participating in the research of their own free choice, without being pressurized or influenced, but that they are fully informed about what it is they are consenting to’ (Davies, 2006: 150).

Thus, an explanation ought to be in terms “meaningful”to participants. (Emphasis added). Researchers should also make clear that participants have the right to refuse permission or withdraw from involvement in research at any time and the extent to which they will be afforded anonymity and confidentiality(British Society of Criminology Statement of Ethics, 2015; Statement of Ethical Practice for the British Sociological Association, 2002). The American Psychological Association’s Ethical Principles of Psychologists and Code of Conduct suggests that researchers should use language that is ‘reasonably understandable’ (2017, Para 3.10a:6).

In most cases of academic research, this process involves two stages; the submission of relevant documents (including a participant information sheet and consent forms) to seek clearance from a university ethics committee and this then requires the researcher making an undertaking to obtain informed consent from the participant prior to the research being conducted. There may be some variation in this process. For example, in a study of international variation in ethics committee

requirements in New Zealand, United Kingdom, Israel, Canada and America a range from nil in Israel to considerable amendments designed to minimise participant harm

157 in New Zealand was found (Goodyear-Smith et al, 2002). As noted above, in the context of this study, these processes were complied with.

As this research involved incarcerated boys, there was a need to pay special

attention to ethical concerns involving consent. At one end of the spectrum, one of the boys was aged 17. The philosophical debate centres around whether children are competent enough to give informed consent or is there a need for additional consent from an adult responsible for the child at the time participation is sought. What then is the level of understanding that children can be expected to have of what they are consenting to?

Farrell (2005) for example, suggests that researchers should regard children as competent participants and therefore respect their informed consent to participate in the research and correspondingly their right to decline involvement or withdraw from research.

As argued by Alderson, ‘to involve children more directly in research can rescue them from silence and exclusion, and from being represented, by default, as passive objects, whilst respect for their informed and voluntary consent can help to protect them from covert, invasive, exploitative or abusive research’ (2001:142). In this process, research involving children should demonstrate ‘respect for children’s status as social actors,’ but should not ‘diminish adult responsibilities’ to them and in so doing there is significant knowledge that can be gained (Woodhead and Faulkner 2000: 31).

From a Malaysian perspective, the age of consent is determined by the Age of Majority Act 1971, which sets the age of majority at 18. Thus, as far as the law is concerned, a child below the age of 18 requires the consent of the parents or

guardians. However, in recognising the social status of children, I felt it necessary for the boy aged 17 to also consent to the study thereby implying that correspondingly, the boy concerned should be able to deny participation.

A second aspect of the spectrum is that given that this research involved boys in institutional settings, Heath et al., (2007) argue that children must be fully informed failing which the consent becomes a question of assent, which refers to a passive

158 acceptance or non-refusal. (Emphasis added). This refers to a ‘non-refusal or simple agreement without the understanding, discretion and legal validity associated with consequences’ (Alderson, 2007:2274).

However, in the Henry Gurney experience, regulatory requirements mandated securing consent from adult gatekeepers (in this case, institutional officers). Thus, my approach was to respect the gatekeeper’s legitimate interests in securing consent but at the same time ensuring that the principle of obtaining informed consent directly from the boys is not ignored or based on passive assent rather than freely given and fully informed consent. This is to avoid making the legal debate about minors’ consent more about adults’ freedoms than about children’s rights (Alderson, 2007:2273).

In the context of this study, the participant information sheets and consent forms were sent to the Henry Gurney School in advance of the interview date. On the date of the interview, the details of the participant information sheet were explained to each participant and participants signed off accordingly. The institution had also mandated that the participants consent to taking part in the study using a standard set of forms prepared by the Prison Department.

Of the ten participants, one was aged 17 at the time of the interview. A child committed to the Henry Gurney School will be subject to the care, control and legal custody of the Commissioner of the Henry Gurney School. Parents do have some measure of visitation rights but in all other respects, the institution now has legal authority over the child akin to a ward of the State. One of the conditions for committal is that the parents or guardian of the child can no longer exercise or is incapable of exercising any proper control over the child (section 75(b) (i) of the Child Act 2001). Therefore, in so far as these child, the Prison Department acted as the institutional guardian and therefore had the power to grant consent in the conduct of research. As considered above, I was not aware of who I was to interview until the day of the interviews itself.

A further matter that emerged was the requirement to submit two copies of the research findings to the Institution as well as the Policy Division of the Malaysian Prison Department. While all participants would be anonymised in the study,

159 anonymity and confidentiality could not be fully assured. Because of this

development, an amended submission to the original University ethics application was made. This was approved before the interviews commenced. The participant

information sheet for the participants in the Henry Gurney School were amended accordingly (Appendices 3 and 4) and all participants were informed of this. Details of the study were explained again to each of the participants and this was done in the Malay language as well. All documents had already been translated to the Malay language prior to the interview. All participants accepted this and there were no withdrawals from the study. Details of these matters are considered below.

One of the advantages of qualitative research is the discovery-based nature of the approach. This approach often yields valuable information that emerge from

conversations with participants and often significant methodological decisions are made on the cusp of new research questions and issues that may be drawn from the process of data gathering itself. However as noted by Smythe and Murray (2000) this complicates the informed consent process as it incurs the risk that the research interview may touch on issues that neither the researcher nor the participant were prepared to discuss and therefore may well go beyond what was specified in the informed consent documents.

The reality though, is that ‘full disclosure of information is neither definable nor achievable’ (O’Neill, 2002:44). A cognizance of these issues is certainly important but perhaps informed consent ‘must not be treated as a sacred principle’ and its

application ‘will vary according to circumstance’ (Hammersley & Traianou, 2012: 98). Some of these issues emerged in this study as participants shared their life experiences beyond the confines of the specific research documents.