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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

The Ethics and Politics of Qualitative Data Sharing0

 

Mark Israel (AHRECS and Murdoch University) and Farida Fozdar (The University of Western Australia).

There is considerable momentum behind the argument that public data is a national asset and should be made more easily available for research purposes. In introducing the Data Sharing and Release Legislative Reforms Discussion Paper in September 2019, the Australian Commonwealth Minister for Government Services argued that proposed changes to data use in the public sector would mean that

Australia’s research sector will be able to use public data to improve the development of solutions to public problems and to test which programs are delivering as intended—and which ones are not.

Data reuse is seen as a cost-efficient use of public funds, reducing the burden on participants and communities. And, the argument is not restricted to government.  Journals, universities and funding agencies are increasingly requiring social scientists to make their data available to other researchers, and even to the public, in the interests of scientific inquiry, accountability, innovation and progress. For example, the Research Councils United Kingdom (RCUK) takes the benefits associated with data sharing for granted

Publicly-funded research data are a public good, produced in the public interest; Publicly-funded research data should be openly available to the maximum extent possible.

In Australia, both the National Health and Medical Research Council (NHMRC) and the Australian Research Council (ARC) have adopted open access policies that apply to research funded by those councils. While the ARC policy only refers to research outputs and excludes research data and research data outputs, the NHMRC strongly encourages open access to research data.

And yet, several social researchers have argued that data sharing requirements, developed in the context of medical research using quantitative data, may be inappropriate for qualitative research. Their arguments rest on a mix of ethical, practical and legal grounds.

In an article entitled ‘Whose Data Are They Anyway?’, Parry and Mauthner (2004) recognised unique issues associated with archiving qualitative data. The main considerations are around confidentiality (is it possible to anonymise the data by changing the details without losing validity) and informed consent (can participants know and consent to all potential future uses of their data at a single point in time?, and alternatively what extra burden do repeated requests for consent place on participants?).

There is also the more philosophical issue of the reconfiguration of the relationship between researchers and participants including moral responsibilities and commitments, potential violations of trust, and the risk of data misrepresentation. There are deeper epistemological issues, including the joint construction of qualitative data, and the reflexivity involved in preparing data for secondary analysis. As a result, Mauthner (2016) critiqued ‘regulation creep’ whereby regulators in the United Kingdom have made data sharing a moral responsibility associated with ethical research, when in fact it may be more ethical not to share data.

In addition, there is a growing movement to recognise the rights of some communities to control their own data. Based on the fundamental principle of self-determination, some Indigenous peoples have claimed sovereignty over their own data: ‘The concept of data sovereignty, … is linked with indigenous peoples’ right to maintain, control, protect and develop their cultural heritage, traditional knowledge and traditional cultural expressions, as well as their right to maintain, control, protect and develop their intellectual property over these.’ (Tauli-Corpuz, in Kukutai and Taylor, 2016:xxii). The goal is that its use should enhance self-determination and development.

To be fair to both the Commonwealth Minister and the RCUK, each recognises that data sharing should only occur prudently and safely and acknowledges that the benefits of sharing need to be balanced against rights to privacy (the balance proposed for earlier Australian legislative proposals have already been subjected to academic critique). The challenge is to ensure that our understanding of how these competing claims should be assessed is informed by an understanding of the nature of qualitative as well as quantitative data, of how data might be co-constructed or owned, of the cultural sensitivity that might be required to interpret and present it, and the damage that might be done as a result of misuse or  misrepresentation.

Acknowledgements
This article draws on material drafted for Fozdar and Israel (under review).
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References:

Fozdar, F. and Israel, M. (under review) Sociological ethics. In Mackay, D. and Iltis, A. (eds) The Oxford Handbook of Research Ethics. Oxford: Oxford University Press.

Kukutai, T. and Taylor, J. (Eds.) (2016) Indigenous data sovereignty: Toward an agenda (Vol. 38). Canberra: ANU Press.

Mauthner, N.S. (2016) Should data sharing be regulated? In van den Hoonard, W. and Hamilton, A. (eds) The Ethics Rupture: Exploring alternatives to formal research-ethics review. University of Toronto Press. pp.206-229.

Parry, O. and Mauthner, N.S. (2004) Whose data are they anyway? Practical, legal and ethical issues in archiving qualitative research data. Sociology, 38(1), 139-152.

This post may be cited as:
Israel, M. & Fozdar, F. (5 February 2020) The Ethics and Politics of Qualitative Data Sharing. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/the-ethics-and-politics-of-qualitative-data-sharing

Conversations with an HREC: A Researcher’s perspective0

 

Dr Ann-Maree Vallence and Dr Hakuei Fujiyama
College of Science, Health, Engineering and Education, Murdoch University, Perth, Australia
http://profiles.murdoch.edu.au/myprofile/ann-maree-vallence/
http://profiles.murdoch.edu.au/myprofile/hakuei-fujiyama/

In our careers to date, we have had many formal conversations with members of HRECs across different institutions regarding human research ethics applications and amendments. We have also had many informal conversations with members of HRECs regarding standard operating procedures in the labs we have worked in. In this article, we share our experience engaging with our HREC in a different context, specifically, formal negotiations with our HREC following an adverse incident that occurred during our data collection for one of our projects.

To provide some context, our research often uses non-invasive brain stimulation techniques including transcranial magnetic stimulation (TMS). TMS has been commonly used in research since the mid-1980s, and is considered safe, non-invasive, and painless. TMS involves a brief, high-current electrical pulse delivered through a handheld coil placed over the scalp, which induces a magnetic field that passes through the scalp and skull with little attenuation. The magnetic field induces current flow in the underlying brain tissue, and if the stimulation is sufficiently intense, it will activate the underlying brain cells providing a measure of brain excitability [1, 2]. There are published international guidelines for the safe use of TMS [3, 4] that are used to design the experiments and screen for contraindications to TMS (for example it is routine to exclude any persons who have a history of epilepsy, metal implants in the skull, or cardiac pacemakers). Nonetheless, research using TMS involves a small but finite risk. Occasionally, research participants experience a mild and temporary headache, nausea, muscular problems, dizziness, or fainting during or after TMS.

In a 12-month period in 2017, we experienced three adverse incidents: three participants in our research projects using TMS fainted#. As mentioned above, TMS studies involve a small but known risk of fainting. There have been some reports of syncope in the literature [5-7]. It is proposed that anxiety and exposure to a novel stimulus are likely responsible for fainting in the context of TMS [3, 5-7], however it is not possible to determine whether fainting or syncope is a secondary effect of an emotional response or a direct effect of the TMS on the nervous system.

It was following the reporting of these adverse events that we found ourselves in formal conversations with our HREC as well as informal interactions with several members of the HREC. There were two key steps involved in these conversations worth outlining. First, we invited the members of the HREC to visit the lab and attend a lab meeting in which we were discussing the adverse events. This engagement with the members of the HREC in our lab environment was a mutually beneficial exercise: it helped researchers to fully understand the concerns of the HREC and helped the members of the HREC to better understand our research procedures and aims, and observe our commitment to minimizing the risks associated with our research.

Second, we scrutinised our standard operating procedures to determine what changes we could make to minimize the risk of another adverse event. As outlined above, fainting during a TMS experiment is highly likely to be related to a psycho-physical response, although we cannot rule out the possibility that it is due to a direct effect of TMS on the nervous system. Following the adverse incidents, we have made several changes to our procedures. First, and perhaps most importantly, we send our potential participants a short video so they can see a typical experiment before they enter the lab. Second, when participants come into the lab we ask them if they have had any substantial change to their routine (for example sleep pattern, medication) feel stressed by factors independent of the research, and if they have had food and water in the preceding few hours (we have snacks and water in the lab if participants haven’t eaten). Third, we made changes to our lab setting such as moving to a modern, clinical testing room which was larger and brighter than the old testing room. Fourth, we take time to explain all of the equipment in the lab, not just the equipment being used in that particular experimental session.

Since the implementation of the changes to our standard operating procedures, we have not experienced an adverse event. The entire process of conversing both formally and informally with the HREC has led to improved written communication of our research to potential participants and HREC in the form of new project applications. Additionally, the process led to the development of resources for members of the lab, such as evolving standard operating procedures and a formal (compulsory) lab induction, and resources for potential participants, such as the communication of study information via a combination of written, video, and photo formats. Importantly, the implemention of revised procedures not only improved the safety profile of our experiments, but also it brought us in a better position to conduct high-quality research by enriching our resources in training lab members, communications with participants, and experience in engaging with HRECs. So, what did we learn from our conversation with an HREC? The processes of conversing with the HREC in the context of an adverse event is beneficial and needn’t wait for an adverse event to occur!

#In a 12-month period in 2017”, note that these are the only fainting incidents that we experienced since we have started our role at MU in 2015

References:

1.         Barker AT, Jalinous R and Freeston IL, Non-invasive magnetic stimulation of human motor cortex. Lancet, 1985. 1(8437): p. 1106-7.

2.         Hallett M, Transcranial magnetic stimulation: a primer. Neuron, 2007. 55(2): p. 187-99.

3.         Rossi S, Hallett M, Rossini PM and Pascual-Leone A, Safety, ethical considerations, and application guidelines for the use of transcranial magnetic stimulation in clinical practice and research. Clin Neurophysiol, 2009. 120(12): p. 2008-39.

4.         Rossi S, Hallett M, Rossini PM and Pascual-Leone A, Screening questionnaire before TMS: An update. Clinical Neurophysiology, 2011. 122(8): p. 1686-1686.

5.         Kirton A, Deveber G, Gunraj C and Chen R, Neurocardiogenic syncope complicating pediatric transcranial magnetic stimulation. Pediatr Neurol, 2008. 39(3): p. 196-7.

6.         Kesar TM, McDonald HS, Eicholtz SP and Borich MR, Case report of syncope during a single pulse transcranial magnetic stimulation experiment in a healthy adult participant. Brain stimulation, 2016. 9(3): p. 471.

7.         Gillick BT, Rich T, Chen M and Meekins GD, Case report of vasovagal syncope associated with single pulse transcranial magnetic stimulation in a healthy adult participant. BMC neurology, 2015. 15(1): p. 248.

Dr Yvonne Haigh
Chair, HREC, Murdoch University. Perth Western Australian

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In 2015, Murdoch University’s HREC received increasing numbers of applications that covered innovative approaches to cognitive neuroscience with a specific focus on TMS (Transcranial Magnetic Stimulation). The topic area covered was very new with significant levels of technical and neuroscience language. While the methods of data collection were relatively unfamiliar for the committee members, several members did undertake some broad reading in order to establish greater familiarity and understanding. However, the applications did refer to different forms of TMS which further exacerbated the committee’s hesitation. In order to establish good rapport between the researchers and the committee, we invited the researchers to present on the topic – TMS. The aim of the presenting was to provide an overview of the variations of the technology, any side effects, international benchmarks and so forth. The committee was certainly reassured with the researchers’ level of experience and expertise. Moreover, it was also apparent the researchers had a sound approach to safety and participants’ wellbeing.
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However, over the ensuing years a range of adverse incidents occurred which involved dizzy spells and fainting in a few cases. The researchers informed the committee and put in place a range of options. The committee was invited to the laboratory to observe and experience the methods. This was particularly helpful and reassuring for the members who attended and enabled a broader discussion with those committee members who could not attend the laboratory. The Manager, Research Ethics & Integrity was also invited to attend a laboratory team meeting where the incidents were discussed, safety procedures revised, and student researchers reminded of their roles and obligations. This meeting enabled a confident report back to the HREC which was aligned with the adverse incident reports and made the committee’s task of reviewing the incidents significantly clearer.
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These conversations and visits resulted in updated procedures (including safety) from the research leaders. This has led to clearer exclusion criteria and additional questions incorporated into the consent process to ensure any known risks are minimised. While adverse incidents are difficult, the outcome in this instance has led to building increased trust between the committee and the research team and a proactive approach from both sides to ensure that new emerging issues are discussed and resolved.
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One of the very clear outcomes of this process has been an increased level of quality in these ethics applications which take less committee time and effort to approve.  While the technology is always evolving, and research in the area is ‘cutting edge’, the possibility that this research may change the lives of participants in these projects is evident in the researchers’ applications. From the committee’s perspective, it has been the open and respectful communication between all parties that has generated both a solid working relationship and enabled high level ethical research. The HREC’s response to a more recent ethics application reviewed since the adverse incidents described begins with the words: “The committee were impressed by the quality of this application and the careful attention to detail. The committee thank the researchers for their ongoing efforts to incorporate suggestions and advice in the collaborative effort to attain ethically strong research and positive outcomes for the community”.

This post may be cited as:
Vallence. A. and Fujiyama, H. (4 February 2020) Conversations with an HREC: A Researcher’s perspective. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/conversations-with-an-hrec-a-researchers-perspective

A users perspective on the ethics application process in Australia-room for improvement0

 

  1. Suat Chin Ng. MBBS, BMedSc, FRACS. Department of Surgery, Eastern Health, Melbourne, Australia.
  2. Wei Ming Ong MBBS Department of Surgery, Eastern Health, Melbourne, Australia.
  3. Shane Belvedere MBBS Department of Surgery, Melbourne Health, Melbourne, Australia
  4. Creski Gilong. MBBS Department of Surgery, Austin Health, Melbourne, Australia.
  5. Dr Nikolajs Zeps. BSc, PhD Research and Development, Epworth HealthCare, Melbourne, Australia. Eastern Clinical School, Monash University, Melbourne, Australia
  6. Philip Smart MBBS, D.Med.Sci, FRACS. Gastrointestinal Clinical Institute, Epworth HealthCare, Australia  Department of Surgery, Austin Health, Melbourne, Australia.

Compliance with ethical standards is fundamental to conducting human research. While there is a need for a thorough review process to prevent unethical research, the administrative workload required can often be significant. Indeed, researchers largely regard the ethics process as an obstacle that needs to be overcome, rather than a key part of the research process itself. In a recent blog on the AHRECS website entitled “Research Ethics Review as a Box-Ticking Exercise”, A/prof Angela Romano identified a significant problem with our current approach to ethical review as being one that promotes a compliance mentality rather than one that actively encourages appropriate and useful ethical reflection throughout the lifecycle of a research project.

Health and Medical Research is aimed at providing new knowledge to improve the health and wellbeing of the community and the fruits of this work will hopefully translate into tangible benefits for everyone. Significant concerns have been expressed by others that the current processes employed to regulate this work in fulfilment of ethical and legal requirements can itself be unethical. For instance, in a recent Blog by Prof Julian Savulescu he comments that whilst no-one is suggesting that research should not be subject to appropriate regulation and ethical review, given the potential to unnecessarily delay important research, all review processes should be as efficient and proportionate to the risk as is possible. Whilst we cannot immediately fix the lamentable lack of investment in undergraduate and post-graduate training in and practical application of ethics, the processes for review of projects could, in our view, be vastly improved with some fairly low-cost interventions.

What are researchers supposed to do to obtain ethical approval?

We reviewed the webpages of 78 Human Research Ethics Committees (HREC) associated with both public and private health services that we identified from the NHMRC list of registered HRECs. This list is only current to 1st March 2018 and we noted that several of the listed HRECs have in fact closed leaving just 71 that could be assessed. We also excluded from our review websites of small clinics which appear to serve only their own needs, eg IVF clinics.

Our review aimed to assess the ease with which researchers could find the webpages of the HREC, or the office of research and/or governance responsible for research oversight, and the level of information provided in terms of 1) instructions relating to how to make a submission itself, and 2) instructions about ethical considerations that may assist researchers to make a sound submission along the lines of A/Prof Romano’s wishes. We scored these objectively using a binary score of 1 if they had a readily accessible website and 0 if they did not. We scored the information related to the submission process in the same way, that is it was either present or not. We decided to include whether or not there was a clear process for considering low risk research in an expedited way consistent with the National Statement as this provided an insight into whether or not the institution regarded such research in a proportionate manner. We further checked on some of the linked documents and policies provided by the HREC, such as guidance on reporting of Serious Adverse Events (SAEs), to check for consistency and whether they were up to date with current guidelines.

We were surprised to find that 8 of 71 hospital based HRECs did not have a website that we could find. In some instances, the information about the HREC was provided via a central state-based portal where elements of the submission process and key local contact details were provided for each of the HRECs. We checked all of the links present in these websites and found that many were broken and in over half of all cases the links to the relevant policies, procedures, and key guidance documents were significantly out of date.

In contrast, we did find several websites that provided excellent resources such as those provided by the St Vincent’s HREC based in Melbourne and the Bellberry private HREC, which are exemplary in the level of useful information and easily accessible guidance they provide to researchers. We observed that of all of the HREC websites reviewed, 30 of the top 37 HRECs which all had accessible websites with useful information about submission were certified HRECs. Only 6 of the bottom 31, with what we considered to be inadequate levels of guidance information, were certified. This raises an interesting question as to whether the need to become certified led them to invest significantly in all aspects of the administrative process, including the development of useful websites.

Table 1: Key findings overall

CriteriaNo of HRECs scoring 1 (total 71)
Easily accessible information about key functions62 (87%)
Clear instructions about submission process62 (87%)
Additional information to guide applicants about ensuring their project met ethical requirements27 (38%)
Clear and proportionate pathway for low risk research43 (61%)
Up to date policies and guidance documents31 (44%)

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Our findings suggest that many health services that run HRECs could significantly improve the researcher experience by simply upgrading their websites to guide researchers more clearly about what is expected of them. As Angela Romano highlighted, the process should not be a box checking exercise and we suggest that if there was clear guidance about what was substantive ethical considerations that needed to be met rather than simply how to fill in the relevant forms we might achieve this, or at least take a step in the right direction.

Whilst we cannot provide any analytical evidence of a correlation it would not be surprising if the improved guidance provided by some HRECs meant that the time to approval was shorter due to a reduction in non-compliant submissions and perhaps even the quality of submission in terms of covering the substantive ethical concerns likely to arise. It is fair to argue that researchers themselves should take the time and effort to ensure that they find out what is expected of them but we suggest that it would be a highly cost efficient exercise to start by making the websites themselves more useful and geared toward this end.

Would you like to find out the score for your institution’s web site/or have an assessment conducted? If you are a https://www.ahrecs.vip subscriber this can be done for free.  Send an email to enquiry@ahrecs.com to discuss.

We did note in reviewing all of the websites that they were all designed differently and put information in different places and in different formats. We would also like to suggest that there would be some value in establishing a national standard for the presentation of core information regarding ethical submission and that there really is no reason that we can see for such wide variation in the way documents are provided. Efforts to harmonise content are evident in groups of hospitals such as Ramsay Healthcare, and we did note that several institutions now utilise the services of a central HREC, either their own for a group of hospitals or of other (certified) HRECs as part of the National Mutual Acceptance (NMA) scheme. We did not observe a great deal of harmonisation of content though outside of mandatory state-specific forms.
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Australia is committed to fostering health and medical research to improve the lives of patients as demonstrated by the State, Federal and charitable sector financial commitments that run to several billion dollars. Enhancing and harmonising website content would seem one way in which a small amount of effort would go a very long way to boosting our capability of doing ethically sound research.
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References:
National Statement on Ethical Conduct in Human Research 2007 (Updated 2018). The National Health and Medical Research Council, the Australian Research Council and Universities Australia. Commonwealth of Australia, Canberra.

Romano, A. (22 June 2019) Research Ethics Review as a Box-Ticking Exercise Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/research-ethics-review-as-a-box-ticking-exercise

This post may be cited as:
Ng, S. C., Ong, W. M., Belvedere. S., Gilong, C., Zeps, N. & Smart, P. (4 February 2020) A users perspective on the ethics application process in Australia-Room for improvement. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/a-users-perspective-on-the-ethics-application-process-in-australia-room-for-improvement

A preliminary geneaology of research ethics review and Māori0

 

Lindsey Te Ata o Tu MacDonald
AHRECS, Consultant
  

In New Zealand, we have two separate drivers for change in research ethics for working with Māori.  The first are the institutional responses to the legal requirements of government institutions to accord justice to the principles of the Treaty of Waitangi (see Te Puni Kokiri, 2001). The second arise where Māori scholars have pulled on practices and ideas within their iwi and hapū to develop a Māori centred research philosophy, that in turn has created a distinctively Māori research ethics.

I made this argument at a recent conference, in a paper to honour the late Barry Smith. Barry, in reviewing ethics applications and creating ethics policy could articulate how to negotiate both with his usual insight, grace and wit and aloha. Without him to drive developments we must think carefully about how to follow his example of synthesising the best of ethical approaches to advance Māori wellbeing and rangatiratanga (roughly translated as indigenous self-determination, see Durie, 1988).

So what is the history of research ethics approaches to research with Māori? First, the radical 1984 Labour government’s privatisation agenda enshrined ‘the principles of the Treaty of Wāitangi’ that put in critical pieces of legislation to ensure continued Māori support. The first, and most important of these Treaty clauses was in section 9 of the 1986 State-Owned Enterprise Act.

s9 nothing in the Act permitted the Crown to act in a manner that was inconsistent with the principles of the Treaty of Wāitangi.

When the government inevitably breached this section, a judicial review case allowed the Court of Appeal (at the time New Zealand’s highest court) to set out its view of the relationship between the Crown and Māori. (New Zealand Māori Council v Attorney-General 1 NZLR 641, (1987) 6 NZAR 353). Later cases set out that consultation had to be conducted with an open mind, and Māori were to be given complete information about the subject. Wellington International Airport Ltd v Air NZ [1991] 1 NZLR 671 (Court of Appeal)

The case indicated that the courts expected any government institution (with a Treaty clause in its enabling legislation) to ‘consult’ – to the satisfaction of a court – with Māori individuals and groups who may be affected by its policies or practices. So all government agencies have since been on notice that they must consult with Māori fully on decisions that might affect Māori, and not to do so could lead to a judicial review of their decision-making by a court. Moreover, any Māori individual could also ask the Wāitangi Tribunal (an ongoing political commission of inquiry into Treaty breaches) to review a government action or inaction which breached the principles of the Treaty of Wāitangi.

Due to these incentives, government agencies got into the practice of consulting with Māori organisations on anything that might be of interest or affect Māori. So both the health sector ethics committees and the University ethics committees developed policies that asked applicants to demonstrate they had ‘consulted’ with Māori.

At the same time, a more humane approach to Māori research ethics was also being developed – it arose from Māori scholars grappling with how to inject Te Ao Māori (literally, the Māori world) into the systems around them. Models included, Te Whare Tapa Whā (Durie, 1984), The Meihana model (Pitama, 2007) and the Hui model (Lacey, 2011), to name but a few. In all of these models, there is a wealth of indigenous knowledge that is also discussed beautifully in Te Ara Tika (Smith, 2010), a guide to reviewing research involving Māori, that arose from Barry’s concerns around gaps in knowledge about Māori and research ethics.

So there is an objective legal risk driving consultation with Māori over research on the one hand, and on the other, a philosophically normative Māori centred ethics, drawn from a Māori-centric approach. They can sit awkwardly together for researchers and reviewers. For instance, the two approaches are often combined as though they are one – so that researchers are left thinking they are legally required to adopt Māori normative ethics prescribed in the scholarly models of Māori research, and so do not listen to the tikanga (protocols) of the local community with whom they are researching. Alternatively, researchers may comply with the spirit of the law and do consultation – but as the government has proved time and time again; meeting the judicial test for consultation can still leave many feeling deeply unheard.

This leaves non-Māori, and I have seen this as a Māori research consultant for my University, in what Tolich called, ‘Pakeha [non-Māori] Paralysis’ – that is, paralysed by Māori concerns and thus avoiding doing research with Māori. Indeed I have counselled academics to avoid Māori centred research because they do not have skills to do it.

The deeper problem is that non-Māori researchers don’t have the resources to research appropriately with Māori. And Māori don’t, and should not have to have the capacity to serve the needs of non-Māori researchers.

I have pointed out the incentives for ethics review for Māori because I believe they can show us how to solve the problem. The law states that ethics reviewers must take seriously the voices of Māori in the research, but taking that seriously is not to follow the dictates of legal cases about consultation – those cases were decided about events unrelated to research or ethics. Nor must ethics committees think particular Māori philosophies of research must apply, since there are many more communities that have their own philosophies, and it is those local philosophies that should be privileged.

If we look to the underlying principles of both Māori research principles and legal cases, they combine to suggest we must take seriously the idea that research engages with Māori when it takes seriously the voices of the communities and participants involved in, or around the research. That is, the researchers should be seeking and assisting Māori voices to be heard in the research, if those Māori communities and individuals wish to be heard. To meet the legal needs, and to ensure Māori are given rangatiratanga, I suggest the appropriate question for a researcher to ask themselves (or be asked by the review committee) is ‘how are you making it possible for the Māori individuals and communities to communicate and participate with you in the project should they wish?

References

Durie, M. (1998). Te Mana Te Kawanatanga: The politics of Maori self-determination. Auckland; New York: Oxford University Press.

Durie, M. (2001). Mauri Ora: The Dynamics of Māori Health.

Pitama, S., Robertson, P., Cram, F., Gillies, M., Huria, T., & dallas-katoa, W. (2007). Meihana Model: A Clinical Assessment Framework. New Zealand Journal of Psychology, 36.

Lacey, C., Huria, T. B.,Lutz, & Gilles, M. P., Suzanne. (2011). The Hui Process: a framework to enhance the doctor–patient relationship with Māori. New Zealand Medical Journal, 124(1347).

Smith, B., Reynolds, P., Russell, K.,& et.al. (2010). TE ARA TIKA Guidelines for Māori Research Ethics : A framework for researchers and ethics committee members. Health Research Council of New Zealand.

Te Puni KokirI (Ministry or Māori Development) (2001) He tirohanga o kawa ki te Tiriti o Waitangi: A guide to the principles of the Treaty of Waitangi as expressed by the Courts and the Waitangi Tribunal. Wellington, N.Z.: https://www.tpk.govt.nz/documents/download/179/tpk-treatyprinciples-2001-en.pdf

Tolich, M. (2002). Pakeha” paralysis”: Cultural safety for those researching the general population of Aotearoa. Social Policy Journal of New Zealand, 164-178.

For a good guide to the history and impact of Treaty clauses in legislation see
Palmer, M. (2008). The Treaty of Waitangi in New Zealand’s law and constitution. Wellington [N.Z.]: Victoria University Press.

This post may be cited as:

Te Ata o Tu MacDonald, L. (4 December 2019) A preliminary geneaology of research ethics review and Māori. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/a-preliminary-geneaology-of-research-ethics-review-and-maori

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