A New National Standard for Human Research Ethics: What Could It Mean for Data Research?

A significant change to Aotearoa New Zealand’s research ethics system may be beginning to take shape.

The Research, Science, Innovation, and Technology Bill was introduced to Parliament on 22 September 2026 as part of wider reforms to the research, science and innovation system. It is still at a very early stage of the legislative process, and much of the detail of the future ethics system remains to be developed. With that in mind, let’s take all of this with a pinch of salt.

But one provision is worth paying particular attention to.

Personal information enters the picture

Section 20 of the Bill concerns the allocation of research, science, innovation and technology funding. Firstly, let us preface this with the fact that this provision is for government-funded research. It is not clear in the proposed bill how non-funded research will be governed by the new National Standard.

However, for argument’s sake, let’s say the Standard goes beyond the realms of funding and includes all ‘research’ activities.

Under the proposed provision, the new funding board would not be able to allocate funding for research that involves, or may involve, human participants, human tissue or personal information — including information about deceased people — unless it is satisfied that the research complies with the national ethical standards for human research.

That explicit inclusion of personal information is important.

Research ethics is sometimes still thought about primarily in terms of researchers interacting directly with participants: recruiting people, obtaining consent, conducting interviews, undertaking interventions or collecting biological material.

Increasingly, however, research happens through data.

As we have discussed previously, Researchers may use administrative records, linked datasets, routinely collected service information, existing research datasets or other forms of personal information without ever meeting the people represented in those data.

The proposed legislation appears to recognise that distinction.

No direct participants does not necessarily mean no ethical issues

Data research can raise significant ethical questions even where there is no direct interaction with participants.

These can include questions about privacy and confidentiality, secondary uses of information, re-identification, group and community harms, data governance, Māori data sovereignty, the use of sensitive information, and increasingly the use of artificial intelligence and machine learning.

The inclusion of personal information in section 20 therefore sends an important signal: human research ethics is not limited to research in which researchers interact directly with people.

For organisations undertaking social, health, population and data research, that is worth watching closely.

But where does research begin and end?

There is another issue sitting underneath section 20.

Not every activity involving personal information is research.

Organisations routinely use information for quality assurance, audit, service improvement, monitoring and evaluation. Many of those activities may raise ethical considerations, but that does not automatically make them research or mean that formal research ethics review is required.

The Bill itself does not resolve that boundary.

That makes the development of the proposed National Standard for human research ethics particularly important.

Among the questions the new framework may need to answer are:

• What constitutes “human research” for the purposes of the National Standard?

• When does secondary use of personal information require ethics review?

• How should administrative and linked-data research be treated?

• Where should the boundary sit between research, evaluation, audit and quality assurance?

• Who should make that determination where the classification is unclear?

• What forms of proportionate review or exemption should be available?

  
  

These are not simply questions of terminology. The classification of an activity can determine which governance pathway it follows and what forms of independent scrutiny apply.

A National Standard with greater significance

The proposed reforms also appear to give the National Standard considerably more significance within the research system.

The Bill proposes that the national advisory committee must determine and publicly make available national ethical standards for human research.

Section 20 then connects compliance with those standards to decisions about the allocation of certain public research funding.

That potentially moves the National Standard beyond being solely a source of ethical guidance. For research captured by section 20, compliance would become part of the statutory funding architecture.

Exactly how compliance will be demonstrated remains to be seen.

Early days; but important questions

It is important not to get ahead of the legislation.

The Bill has only just been introduced. It has not yet completed the parliamentary process, the new National Standard has not been developed, and many aspects of implementation remain unknown.

But section 20 provides an early indication of the direction of travel.

The explicit inclusion of personal information recognises something increasingly important about modern research: people can be participants in the ethical sense even when researchers never meet them.

As research becomes increasingly data-intensive, the ethical framework needs to evolve with it.

The challenge will be to develop a National Standard that provides meaningful protection without treating every use of information as research requiring formal committee review.

That means getting the boundaries right, providing proportionate pathways, and ensuring researchers and organisations can confidently determine when independent ethics review is, and is not, required.

Those conversations are only beginning.

The Collective will be following the development of the Bill and the National Standard closely and contributing to the discussion as the new research ethics framework takes shape.