Why we made the Independent human research ethics collective

By Lindsey Te Ata o Tū MacDonald & Hannah Neale

In Aotearoa New Zealand, if you are a university researcher, there is a well-worn path to ethics review. If you are running a clinical trial, there has been a path for a long time too through the Ministry of Health Committees (HDECs). Originally, HDECs would allow community and other researchers to apply. But after 2012, if you worked in a community organisation, an NGO, a professional association, a local council, a government agency, or a small research firm: there was no path at all.

This is the story of what happened when experienced ethics reviewers (former HDEC chairs), Martin Tolich, Paul Flanagan and Trevor James took that gap seriously. They built a voluntary ethics committee. And they treated applicants like collaborators, not problems to be managed. Then, when the success of that model began to exhaust the very volunteers who made it possible, a new generation of reviewers built a second pathway beside it—so that “free” did not keep meaning “unpaid”.

This is the story of the New Zealand Ethics Committee, then Aotearoa research ethics committee and now the Independent Human Research Ethics Collective.

The gap we kept pretending was not there

For decades, formal ethics review in Aotearoa was anchored to two worlds: health and tertiary education. If you were outside those worlds, you were often outside the research ethics system (though some government research organisations did (and do) have their own ethics review systems such as the Ministry of Social Development).

At their creation the health committees (Health and Disability Committees or HDECs), would largely accept community research applications. In 2012, however, government reforms to the HDECS closed the door on community researchers.

As HDEC chairs, Martin, Paul and Trevor, saw this up close. Community researchers would approach a health ethics committee asking, in effect, can you please help us do this properly? But if the project was not health research that met the HDEC scope, the answer—under the rules—had to be no.¹

At the same time, the demand for evidence in a contract-driven, outcomes-measured environment intensified. NGOs and service organisations were increasingly expected to evaluate and to prove value. And yet they were still often doing that work without accessible ethics support.

This wasn’t just inconvenient. It was risky; for participants, for organisations, and for the quality of the research itself.

The first response: build something outside the institutions

In 2013, a group of former HDEC chairs established the New Zealand Ethics Committee (NZEC).²

NZEC took a deliberately unusual position in the landscape, as the first completely voluntary and institutionally unaffiliated ethics committee (as far as we know, a world first).

It was independent. It was voluntary to apply. It was free to apply. It focused on research ethics, not research governance: it reviewed applications not for the protection of an institution’s reputation, but for the protection of participants and the researchers, as well as in support of good practice.³

NZEC tried to live a simple premise that the regulatory culture of ethics review should grant researchers the same level of respect that researchers should offer participants.⁴

NZEC built its approach around that idea. Dialogue mattered. Tone mattered. The applicant was not an adversary. They were a human being trying to do careful work. And since it was voluntary, the onus was on NZEC to show why it was worth getting review; so reviews needed to explain the reasoning of their points and add value to the research.

How NZEC was received: “powerless” or even “transgressive” — until it wasn’t

In NZEC’s first full year (2013), it received 14 applications.⁵ The point wasn’t scale. The point was access.

Applicants often sought review even when they were not legally required to do so, because ethics review gave legitimacy with funders and signalled rigour. They said: we wanted to do this right.⁶

NZEC described itself as “powerless” in a very specific sense: applicants could, in principle, take or leave the committee’s advice. But that “powerlessness” did not last.

As applications grew—up from 15 in 20113, 22 in 2024 to 51 in 2015, funders, clients, professional bodies, and journals increasingly required ethics approval as a condition of money, commencement, or publication.⁷

A voluntary committee had power thrust upon it by the wider ecosystem.

On the one hand, ethics review was becoming more normal across parts of the community and government research world. On the other hand, the “free” labour of volunteers was quietly underwriting work commissioned by well-resourced institutions.

A new structure: AREC

By 2019, the original founders wanted to step back. NZEC’s continuation needed a structure that could outlast individuals.

So Aotearoa Research Ethics Committee (AREC) was created, under the auspices of a charitable trust comprised of former NZEC reviewers. AREC carried forward the same core kaupapa: independent ethics review for researchers who could not access an HDEC or an institutional committee.

And it kept faith with the same relational ideal: ethics review as something that should strengthen ethical practice, not just police it.

The problem of success (again): when “free” starts to mean “unsustainable”

The better a system is, the more people rely on it.

Over time, the volume and complexity of applications increased. The range of applicants widened. Review stopped being a small act of mutual aid and started to look, at times, like a parallel public service; except staffed by volunteers. By 2024 there upwards of 75 applications, over 75% of which were by commercial or government researchers.

And volunteers are not an infinite resource.

Success like this is easy to romanticise. It is also where organisations quietly burn people out. You begin by saying yes because the work matters. You keep saying yes because there is no one else. Then you realise that the thing you built to protect ethical research is putting your own reviewers in an ethically awkward position: doing skilled, time-consuming labour for free while agencies and companies treat ethics review as just another box in a funded project.

IHREC: building a paid pathway so the free one can survive

That is why we formed the Independent Human Research Ethics Collective (IHREC).

IHREC exists to meet demand from researchers who cannot access Government funded research ethics review via tertiary or government agency processes, or via the Health and Disability committees. It meets the demand for private and government sector researchers for review, but its structure allows us to pay experienced chairs and reviewers, and to reflect the true cost of the work back to the applicants. Institutions—particularly government agencies—can no longer expect ethics review for free.

IHREC is a not-for-profit company. It was created because AREC, as a volunteer, pro-bono service cannot cope with the number of applications it receives.So IHREC and AREC complementary.

• IHREC is for organisations that can pay and need a clear, efficient, market-rate service.

• AREC remains the charitable sister organisation for those with less money and more time, including community researchers and overseas students.

We built a paid pathway to protect the free pathway.

And we carried forward the same ethical commitment that shaped NZEC and AREC: a review process that treats applicants with dignity and autonomy, and gives clear, constructive feedback that improves both the research and the researcher’s experience of ethics review.

Why this matters

This story is not only about committees. It is about a persistent structural gap.

For too long, many researchers in Aotearoa were doing human research without a realistic route to ethics review; unless they could borrow institutional cover by co-opting a University researcher.

NZEC showed a different way was possible: independent, voluntary, relational, respectful. It also showed what happens when a good idea becomes widely relied on: demand grows, and unpaid labour becomes normalised.

AREC kept the kaupapa alive through a new structure.

IHREC adds a second channel so that “accessible ethics review” does not keep meaning “someone else will donate their evenings”.

The point is simple. Ethics review should be available to the people who need it. It should strengthen ethical practice. And it should be done in a way that is sustainable—for researchers, for participants, and for the reviewers whose judgement makes the whole system credible in the first place.

Recently, the government has announced it gets the problem too (we will demur from pondering whether we had anything to do with it). We understand that Cabinet has agreed in principle that HDECs will be able to charge the private sector for clinical review, and that Aotearoa New Zealand should have a national statement on research ethics that will cover all research.

To finish, we thank Martin Tolich, Paul O’Flanagan, Trevor James, and the late Barry Smith, for their work in founding the NZ ethics committee and pointing the way, and we have enormous gratitude for all of the ethics committee members around the Motu who are doing voluntary work to keep the the research lights on in Universities and our Health sector (and yes we include HDEC members in that, since the level of their pay means it is voluntary work). Finally we are humbled and grateful to those who have found IHREC of help, and to many others who have shown us support in this startup journey.

1. Tolich, M., & Marlowe, J. (2017). Evolving power dynamics in an unconventional, powerless ethics committee. Research Ethics, 13(1), 42–52. https://doi.org/10.1177/1747016116657015 & Kara, H., & Pickering, L. (2025). How can we reform research ethics management to make it fit for purpose? Research Ethics, 21(4), 736–755. https://doi.org/10.1177/17470161251351389 ↩︎

2. Marlowe, J., & Tolich, M. (2015). Shifting from research governance to research ethics: A novel paradigm for ethical review in community-based research. Research Ethics, 11(4), 178–191. https://doi.org/10.1177/1747016115579536 ↩︎

3. Tolich, M., & van den Hoonaard, W. C. (2014). The New Brunswick Declaration of Research Ethics: A Simple and Radical Perspective. Canadian Journal of Sociology, 39, 87–98. ↩︎

4. Flanagan, P., & Tumilty, E. (2015). How does Voluntary Ethics Improve Research? Introducing a Community Research Development Initiative. Whanake: The Pacific Journal of Community Development, 1(2), 14–23. ↩︎

5. Marlowe & Tolich (2015) ↩︎

6. Marlowe & Tolich (2015) ↩︎

7. van den Hoonaard, W. C. (2013). The “Ethics Rupture” Summit, Fredericton, New Brunswick, Canada, October 25–28, 2012. Journal of Empirical Research on Human Research Ethics: An International Journal, 8, 3–7. https://doi.org/10.1525/jer.2013.8.1.3 ↩︎