Ethical considerations

The increased concern for accountability in research has led to the establishment of systems for research governance. Thus, data and information arising out of research should be accessible and open to scrutiny. This requires researchers to conduct their work responsibly, subject to the highest ethical standards within the moral and legal regime of the society in which the research is conducted as well as to the wider society it serves.

146 The nature of the in-depth, unstructured nature of qualitative research and the fact that ‘it raises issues that are not always anticipated mean that ethical considerations have a particular resonance in qualitative research studies’ (Ritchie and Lewis, 2003:66). The need to pay close heed to ethical issues in qualitative research is well documented (Ritchie et al 2013, Miller et al 2012; Christians, 2000; Denzin & Lincoln, 2000; Fine et al, 2000 among others). This involves responsibilities to research participants, particularly the boys, to colleagues, policy makers, and the people to whom the findings derived will be made aware of.

Joseph Maxwell (2009:216) argues that ‘ethical concerns should be involved in every aspect of design’ including methods, goals, the selection of research questions, validity concerns, and the critical assessment of the conceptual framework. Given that there was a need to interview a range of participants, it was envisaged thatthere would likely to be inherent tensions particularly owing to the fluidity and inductive

uncertainty in undertaking qualitative research with ethical guidelines that are static and increasingly formalised through the requirements in ensuring ethics clearances in universities and funding agencies.

Thus, this study sought to ensure that participants had a complete understanding of the purpose and methods to be used in the study, the risks involved, and the demands placed upon them as a participant. Participants were also made aware that due

consideration would be made to ensure that confidentiality is maintained but that despite every effort made to preserve it, anonymity and confidentiality may in certain circumstances be compromised.

The primary ethical issues in this research revolved on issues of informed consent, anonymity and confidentiality. The other key issues related to the management of disclosures, and to participants’ potential discomfort, particularly for the boys in the Henry Gurney School.

Further as this research involved incarcerated boys with one aged 17, due care and diligence to the protocols covering such research as defined by the United Nations

Convention on the Rights of the Child (CRC), the Research Ethics and Research Governance Code at Lancaster University as well the standards of good ethical and

147 research practice published by The British Society of Criminology’s Code of Ethics for

Researchers (now the British Society of Criminology Statement of Ethics) 2015 and the Social Research Association. The principles of good practice set out in the Data Protection Act 1998 (UK) and the Personal Data Protection Act 2010 (Malaysia)

were abided by.

However, as Smyth and Williamson note (2004: 10), these codes operate primarily on a system of ‘self-regulation’ given that membership of these organisations is

voluntary and the guidelines are not enforceable by law. In fact, Goodyear-Smith et al (2002) suggest that if the emphasis is on the prevention of unethical research, this inevitably results in the impediment of researchers from doing their work. The preferable focus should be the promotion of ethical research. (Emphasis added). Yet this is also a contested matter with some arguing that the ethical review process is more concerned about institutional liability (Adler and Adler, 2002) than about the promotion of ethical research.

While social researchers can interpret ethical guidelines as just that, merely guidelines, researchers are, nevertheless, subject to certain legal requirements that influence how research ethics, and more specifically issues of informed consent, are managed particularly where children are involved. Malaysia does not have similar provisions to for example Article 8 of the United Kingdom’s the Human Rights Act 1998 or the Data Protection Act 1998 which has been suggested to have relevance to consent in relation to all research (Montgomery, 2003).

The Human Rights Act 1998 protects the right to respect for private and family life and is argued to support the need for consent to participate in research (Masson, 2004). In the context of medical records, the European Court of Human Rights is of the view that, ‘the protection of personal data, particularly medical data, is of

fundamental importance to a person’s enjoyment of his or her right to respect for private and family life as guaranteed by Article 8 of the Convention’ (MS v Sweden (1997) 28 EHRR 313, para. 41).

The Malaysian constitution does not have similar provisions and the right to privacy is not expressly recognised as a constitutional right. Malaysian courts have

148 however recognised a cause of action for violation or invasion of privacy rights is actionable under the law of tort. For example, in Lee Ewe Poh v Dr Lim Teik Man & Anor [2011] 1 MLJ 835, a patient was successful in an action against her doctor for taking photographs of her private parts during a stapler haemorrhoidectomy procedure without her consent.

The Malaysian Personal Data Protection Act 2010 regulates the collection, holding, processing and use of personal data however; the Act has no application in relation to non-commercial affairs. There are specific laws that govern healthcare and the issue of consent is recognised as far as research in these areas are concerned. The lack of specific regulatory framework governing the right to privacy in Malaysia notwithstanding, this research adopted those standards expected and expressed through the various codes and guidelines identified.

In the context of this study, the initial submission for ethical approval commenced in November 2015 and involved the completion of the required documentation as per the Research Ethics and Research Governance Code at Lancaster University. This involved the completion of prescribed forms, the submission of an outline of the proposed study and documents that provide an assurance of ethical procedures to follow regarding the use of human subjects in this study (a complete set of participant information sheets and consent forms with variations to take into account the

appropriate level of understanding for children). At this point in time, details of the potential incarcerated participants were not known. Ethical approval was obtained in early 2016. An amended submission was made in July 2017 following conditions imposed by the Henry Gurney School. This is considered below.

As such, formal written consent from all participants was obtained including from the legal guardians of the boys and from the boys directly involved in the research. This was supported with an information sheet specifying what participation entails. Participants were given assurances as to confidentiality and anonymity as well as to their right to withdraw from the research. All data was digitised, password protected and all portable devices used for the storage of identifiable data was password encrypted. The relevant documents are found in Appendices 1 and 2.

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