The first objective of this article is to demonstrate that ethics committee members can learn a great deal from a forensic analysis of two classic psychology studies: Zimbardo’s Stanford Prison Study and Milgram’s Obedience Study. Rather than using hindsight to retrospectively eradicate the harm in these studies, the article uses a prospective minimization of harm technique. Milgram attempted to be ethical by trying to protect his subjects through debriefing and a follow-up survey. He could have done more, however, by carrying (...) out what ethics committees routinely insist on today for those researching sensitive topics. The establishment of counselling supports to identify harm to participants would have minimized additional harm. Were these in place, or in Zimbardo’s case had the Stanford Ethics Committee properly identified Zimbardo’s conflict of interest – he was both a principal investigator and the prison warden – how much harm could have been minimized? The second aim is to examine how some qualitative authors routinely demonize these classic studies. It might appear that there are too few cases of unethical qualitative research to justify such an examination; however, this article identifies a number of recent examples of ethically dubious qualitative research. This would suggest that qualitative research should examine its own ethics before poaching from psychology. (shrink)

The National Women's Hospital research scandal saw women being involved in medical research without their knowledge and without the opportunity to make a choice about their participation. The 1988 Cartwright Inquiry into this decades-long study established a template for ethics review in New Zealand. Ethics committees were subsequently established to independently assess the potential benefits as well as risks of research. This book describes the gradual undermining of the independence of New Zealand ethics review and the politicisation of ethics committees (...) between 1988 and 2014. The authors, involved continuously in ethics review matters over the period, have seen substantial change brought about by government in response to another medical research crisis - in Gisborne in the late 1990s - and then between 2008 and 2010 an economic crisis involving foreign pharmaceutical companies. Some New Zealand medical researchers claimed that the ethics review process for clinical trials was too slow and was losing the country its economic advantage. This book traces the changes and the implications for a robust ethics review process in all research environments in New Zealand, especially those affecting Maori. The book includes a set of suggestions and recommendations aimed at enhancing independent ethics review, best practice, and the provision of adequate protection for all citizens. (shrink)

Since the 1988 Cartwright Inquiry, lay members of ethics committees have been tasked with ensuring that ordinary New Zealanders are not forgotten in ethical deliberations. Unlike Institutional Review Boards in North America, where lay members constitute a fraction of ethics committee membership, 50% of most New Zealand ethics committees are comprised of lay members. Lay roles are usually defined in very broad terms, which can vary considerably from committee to committee. This research queries who lay representatives are, what they do, (...) and what if anything they represent. Our findings are based on data collection with 12 participants: eight semi-structured interviews with lay members from diverse types of ethics committees who described their roles, and commentary from four ethics committee chairs, three of these lay members who commented on this article’s final draft. Findings indicate that the role of New Zealand lay persons – although distinctively valued – is otherwise similar to the documented role of lay persons within North American ethics committees. Lay members see their role as primarily protecting the research participant and at times offering a corrective to non-lay members’ views and the interests of their institutions. However, in spite of their numbers, most lay members do not see themselves as representing any particular constituent groups or institutionally unaffiliated areas of concern. On tertiary education committees especially, there is a good deal of ambiguity in the lay role. (shrink)

This study examines a significant gap in the role of providing ethical guidance and support for community-based research. University and health-based ethical review committees in New Zealand predominantly serve as ‘gatekeepers’ that consider the ethical implications of a research design in order to protect participants and the institution from harm. However, in New Zealand, community-based researchers routinely do not have access to this level of support or review. A relatively new group, the New Zealand Ethics Committee, formed in 2012, responds (...) to the uneven landscape of access for community-based research. By offering ethical approval inclusive of the review of a project’s study design outside institutional settings, NZEC has endeavoured to move beyond a gatekeeping research governance function to that of bridge-building. This change of focus presents rich possibilities but also a number of limitations for providing ethical review outside conventional institutional contexts. This paper reports on the NZEC’s experience of working with community researchers to ascertain the possibilities and tensions of shifting ethics review processes from research governance to a focus on research ethics in community-based participatory research. (shrink)

A previous research ethics article by the authors provided evidence to support the claim that the New Zealand Ethics Committee was a powerless ethics committee. Ethics review applicants were not formally obliged to seek ethics review, and any committee recommendations were given on a ‘take it or leave it’ basis. One year later, the capacity of applications has doubled, and NZEC finds its core assumptions challenged as funders and government agencies now compel contracted researchers to make use of this free (...) service. Moreover, NZEC has expanded into research areas inhabited by market researchers, long shy of ethics review. Review requirements and remit expansion challenges some, but not all, aspects of NZEC’s assumption of powerlessness as NZEC remains committed to research ethics, not research governance, and it adheres to the principles of the New Brunswick Declaration to respect applicants the same way it expects applicants to respect participants. This annual survey of applicants makes NZEC accountable to its applicants, providing evidence once more that NZEC’s expeditious and cordial review of applications is considered different from traditional ethics review. (shrink)

Finding Your Ethical Research Self introduces novice researchers to the need for ethical reflection in practice and gives them the confidence to use their knowledge and skill when, later as researchers, they are confronted by big ethical moments in the field. -/- The 12 chapters build on each other, but not in a linear way. Core ethical concepts like consent and confidentiality once established in the early chapters are later challenged. The new focus becomes how to address qualitative research ethics (...) when confidentiality and consent take on a limited form. This approach helps students understand that the application of concepts always requires thoughtful adaptation in different contexts and the book provides guidance on how to do this. Classroom/workbook exercises develop alternative solutions to create process consent, internal confidentiality, and engage reference groups, as examples. The first eight chapters allow students to develop their ethical research self before thinking through how they might address formal ethics review. Formal ethics review is deliberately not introduced until Chapter 9. Chapter 10 offers practical help to elements of review, before Chapter 11 emphasises the key message by providing examples of researchers' dilemmas in the field using vignettes and discussion. By providing these examples, students become aware that these can arise, explore how they might arise, and recognise how they might deal with them in the moment when they are unavoidable. -/- With numerous examples of ethical dilemmas and issues and questions and exercises to encourage self-reflection, this reflexive, learn-by-doing model of research ethics will be highly useful to the novice researcher, undergraduate, and postgraduate research student. (shrink)

Low-level community based ethics committees staffed by teachers, parents and community representatives can readily review children’s science fair projects subject to the revision of two core assumptions currently governing children’s Science Fairs. The first part of the paper recasts the New Zealand Royal Society guidelines from its primary emphasis on risk to a new assumption, without benefit there can be no risk. Equally, this revision gives more prominence to the participant information sheet, allowing it to act as a quasi application (...) form which provides ethical transparency between student researchers, participants and a community based ethics committee. A second core assumption, more accurately labeled a cult of originality, produces a random, open-ended array of student topics taking ethics review beyond the confidence level of most community based ethics review committees. This paper reins in Science Fair coordinators recommending they make community level ethics review more manageable by providing a list of preapproved topics for those students wanting to conduct research involving human participants. These revised assumptions create a workable division of labour. Teachers’ preapproved topics involving human participants are more likely to be low risk, permitting community level ethics review to focus primarily on two aspects of the minimization of harm: first, for all participants, especially those with diminished autonomy, and second, for the child researchers themselves, as some participants may be unknown to the student. These revised assumptions make science and ethics more accessible to public education thus demonstrating how Science Fairs can lead students and the community into better understanding the role and function that ethics has in all scientific research human participants. (shrink)

Laura Stark’s ethnography of IRB decision-making unearthed two concerns: first, even though the committees were governed by ethical principles, the committees generated their own precedents for future decision-making; second, Stark witnessed unequal power relations within committee decision-making as a member’s expertise was accepted as a ‘warrant’. This article examines how these warrants are practiced within the decision-making process of New Zealand’s four Health and Disability Ethics Committees. More specifically, this article concerns these warrants during a committee’s decision to consult with (...) indigenous communities, a decision for which there exist no guidelines. The article ends by discussing ethical issues when observing in public places. (shrink)

This paper demonstrates the limited efficacy procedural ethics has for qualitative research. Ethics committee's instructions have a short shelf life given the research question qualitative researchers create is volatile; that is, likely to change due to the inductive, emergent, informant-led nature of qualitative research. Design-This article draws on extensive literature to examine the void between the original research design and the messy reality experienced in the field. We focus on how researchers can practice ethically by recognizing the need for agile (...) and responsive ethics praxis in their work. Findings-This practice describes the researcher, recognizing the initial support from an ethics committee and its limitations, but as the research gets underway assuming full responsibility for ethical considerations that emerge in the field. Practical implications-Researchers' responsibilities entail recognising the dual …. (shrink)

Neither ethics committees nor qualitative researchers can predict the types of ethical dilemmas that will happen in the field, only that they will routinely occur. In Qualitative Ethics in Practice, a team of fifteen top researchers from various disciplines and nationalities offer ethical strategies unique to qualitative researchers for those "big ethical moments" beyond what can be predicted by ethics committees. Ideally structured for qualitative classes that tackle ethics issues, the book -calls for an ethical code unique to the practice (...) of qualitative research; -uses a variety of cases from education, community development, tourism, family, and other settings to examine how researchers addressed ethical dilemmas in practice, including the infamous Belfast Project; -highlights some relevant models and programs being developed that may lead to solutions. (shrink)

Despite recommendations from the Cartwright Report ethical review by health ethics committees has continued in New Zealand without health practitioners ever having to acknowledge their dual roles as health practitioners researching their own patients. On the other hand, universities explicitly identify doctor/research-patient relations as potentially raising conflict of role issues. This stems from the acknowledgement within the university sector itself that lecturer/research-student relations are fraught with such conflicts. Although similar unequal relationships are seen to exist between health researchers and their (...) patients, the patient/subjects are not afforded the levels of protection that are afforded student/subjects. In this paper we argue that the difference between universities and health research is a result of the failure of the Operational Standard Code for Ethics Committees to explicitly acknowledge the vulnerability of the patient and conflict of interests in the dual roles of health practitioner/researcher. We end the paper recommending the Ministry of Health consider the rewriting of the Operational Standard Code for Ethics Committees, in particular in the rewriting of section 26 of the Operational Standard Code for Ethics Committees. We also identify the value of comparative ethical review and suggest the New Zealand's Health Research Council's trilateral relationship with Australia's NHMRC (National Health and Medical Research Council) and Canada's CIHR (Canadian Institute of Health Research) as a useful starting point for such a process. (shrink)

Informed consent and confidentiality supposedly minimize harm for research participants in all qualitative research methodologies, inclusive of one-on-one unstructured interviews and focus groups. This is not the case for the latter. Confidentiality and informed consent uniquely manifest themselves as endemic ethical dilemmas for focus group researchers. The principle of caveat emptor (let the buyer beware) may be a more useful tool for those involved in focus group research: that is, let the researcher, the participants and the ethics committee beware that (...) the only ethical assurance that can be given to focus group participants is that there are few ethical assurances. These ethical dilemmas are not sufficiently realized in the literature, and if they are discussed, they are often dealt with within the focus group moderator’s preamble to the group discussion. This paper encourages the mandatory use of a participant information sheet sufficiently detailed to engender the participant’s active consent. Sufficient here means the participant must be made adequately aware of these endemic ethical dilemmas in advance, to allow them to consent to share responsibility for any ensuing harm. The focus group moderator is not their sole protector. (shrink)