Picture this: You're evaluating a disability support program. Family members are heavily involved in coordinating services, managing appointments, and observing outcomes. Your evaluation design includes interviews with these family members about the participant's experience with the program, such as their progress, their satisfaction, their quality of life improvements. It seems practical, even necessary. But have you stopped to ask: whose story are you actually collecting?
The 2025 National Statement doesn't provide a neat answer to this question, and for good reason. The ethics of collecting data from third-party respondents about a participant's experience, whether family members, carers, teachers, support workers, or others, sits squarely in grey territory. The appropriateness depends on context, relationships, consent processes, and the fundamental question of who has the right to narrate someone else's experience.
Why This Matters
At its core, this issue engages two fundamental principles of the National Statement: respect and justice.
Respect requires recognising the intrinsic value of human beings and their capacity to make decisions about their own lives, including decisions about who tells their story and how it's told. When we collect data from a third party about a participant's experience, we risk bypassing this fundamental respect, particularly when the participant hasn't consented to their story being shared in this way.
Justice demands fairness in how we select participants and distribute the benefits and burdens of research. Is it fair to make someone the subject of research inquiry without their knowledge or agreement? Even if they're not technically a "participant" in the study (in the sense used by the National Statement), their experiences, perspectives, and potentially sensitive information are being captured and analysed.
This isn't a purely academic concern. Consider:
- A parent describing their child's emotional struggles in a school program, when the child would prefer that information remain private;
- A carer reporting on an older person's cognitive decline, potentially revealing information the person would find stigmatising;
- A support worker sharing observations about a client's behaviour that the client experiences differently or contests; or
- A family member speaking for an entire household when cultural norms around individual privacy may vary within that family.
In each case, someone's story is being told, but by whom, with what authority, and with what consequences?
The "Story Ownership" Lens
There are situations where third-party data collection is not just acceptable but necessary. The question is whether researchers and evaluators are thinking carefully enough about when and how it's appropriate.
When it may be justified:
Consider a program evaluation where the lived experience of family carers is genuinely the focus of inquiry, but that experience cannot be meaningfully understood without context about the person they're caring for. A study exploring carer burden, for instance, necessarily involves the carer describing aspects of the care recipient's condition, needs, and responses to support. Here, the carer's story includes their relationship to and observations of another person.
Similarly, in early childhood programs, parents or guardians are often the most appropriate respondents about a young child's development and program experience. The child cannot meaningfully participate directly, and the parent legitimately holds knowledge about the child's experience that is both relevant and appropriate to share in a research context.
Cultural contexts matter enormously here. In some Aboriginal and Torres Strait Islander communities, for example, it may be entirely appropriate and expected for elders or senior family members to speak on behalf of others. The National Statement's emphasis on meaningful engagement with communities (Chapter 4.7) recognises that Western individualistic notions of consent and autonomy don't universally apply.
When it becomes ethically problematic:
The line blurs when the primary research interest shifts from the third party's own experience to using them as a convenient proxy for the participant's experience. This is where "story ownership" becomes critical.
If your research question is fundamentally about the participant's experience, satisfaction, outcomes, or perspectives, then collecting this data from someone else without the participant's knowledge or consent raises significant ethical risks. You're not just gathering convenient proxy data; you're potentially:
- Violating the participant's privacy by revealing information they might not choose to share
- Denying them autonomy over their own narrative
- Creating risks of misrepresentation (the third party's interpretation may not align with the participant's actual experience)
- Perpetuating power imbalances, particularly where the third party is in a position of authority or care over the participant
Chapter 4.4 of the National Statement addresses people in dependent or unequal relationships, noting that such relationships can compromise voluntary participation and increase risks of exploitation. When we collect data about someone from a person who has power over we're not just observing an existing power dynamic; we're potentially reinforcing it by centring the more powerful person's narrative. There are also legitimate risks of emotional harm and discomfort that can arise in the event that a participant were to become aware of their story being used in a way that they have not consented to. The more personal the story and the wider the use and distribution of the findings, the higher the risk.
Practical Considerations: Questions to Ask Yourself
If you're designing research or evaluation that involves third-party respondents providing data about participants' experiences, it can be helpful to work through these questions. Moreover, thinking through and responding to these questions can enable you to anticipate potential questions that arise in the ethical review process.
1. Justification Questions
What is the primary research objective?
Am I genuinely interested in the third party's experience and perspective, or am I using them as a proxy because it's more convenient than engaging with the participant directly?
Why can't I collect this data from the participant themselves?
Is it genuinely impracticable (e.g., participant lacks capacity, is too young, is unavailable), or have I assumed it would be too difficult without properly exploring alternatives?
What knowledge does the third party legitimately hold?
Can they speak to observable behaviours and their own interactions, or am I asking them to speculate about internal states, preferences, and experiences they cannot actually know?
How am I accounting for this speculative knowledge in my analysis process?
What are the cultural norms?
In this community or context, who appropriately speaks for whom?
Have I engaged with the community to understand these norms rather than imposing my assumptions?
2. Risk Mitigation Questions
What could go wrong?
What information might be revealed that the participant would want to keep private?
Could this data collection damage the relationship between participant and third party?
Could it reinforce harmful power dynamics?
Does the participant know their story is being shared?
Even if formal consent isn't feasible, has the participant been informed that third parties will be discussing their experience?
Do they have any opportunity to object or set boundaries?
How am I managing confidentiality?
If the third party reveals sensitive information about the participant, how am I protecting that information?
Am I clear about what will and won't be shared in outputs?
What about power dynamics?
If there's a dependent or unequal relationship, how am I accounting for this?
Could the third party's responses be influenced by their position of power or dependency?
Could the data collection itself affect the relationship?
Is there potential for harm through misrepresentation?
How would the participant respond if they knew how they were being described?
Could the third party's account differ significantly from the participant's own experience in ways that could cause harm if published?
3. Design Alternative Questions
Could I collect this data directly from participants?
What adaptations to my methods might make direct participation possible (e.g., accessible formats, appropriate support, cultural protocols)?
Could I collect both perspectives?
Would there be value in gathering the third party's observations and the participant's own account, acknowledging they may differ?
Am I confusing convenience with necessity?
Is this approach genuinely the only viable option, or is it just easier than the alternatives?
Have I consulted widely enough?
Have I sought input from people with relevant lived experience, advocacy groups, or community representatives about whether this approach is appropriate?
What's my fallback position?
If I can't justify collecting this data from third parties, can the research/evaluation question be adequately addressed through other means, or does it need to be reconsidered?
Illustrative Scenarios
To help you navigate this issue, we've developed a set of illustrative case studies of programs where this issue arises, and potential strategies for addressing risks. While it can't cover the full range of research and evaluation scenarios, and each application to our committee is judged in its context, the scenarios can provide support in identifying similar risks and mitigation strategies for your work.
Scenario 1: The Education Program
A primary school is evaluating a wellbeing program. The evaluators plan to interview teachers about individual students' emotional regulation, social skills development, and behavioural changes.
The problem: The teachers are being asked to report on students' internal experiences and development, i.e. the students' story. The power dynamic is significant (teachers have authority over students), and students have no opportunity to consent to or even know about these discussions.
A possible approach: Focus teacher interviews on their own experience of delivering the program and their observations of classroom dynamics. Separately, use age-appropriate methods to gather students' own perspectives on the program (e.g., simple surveys, drawings, or structured activities). If developmental stage or considerations under Chapter 4.3 of the National Statement makes direct participation impracticable for some students, justify this clearly and consider whether parental/guardian perspectives might be more appropriate than teacher perspectives for questions about individual student wellbeing.
Scenario 2: The Aged Care Service
An evaluation of a dementia support service includes interviews with family carers about how the service has affected the person living with dementia such as their mood, their cognitive function, and their quality of life.
The problem: The carer's wellbeing is intrinsically linked to the person they're caring for. Their observations have value. But asking them to report on the participant's internal states and quality of life makes the participant the subject of inquiry without their involvement.
A possible approach: Distinguish clearly between:
- Questions about the carer's own experience (their stress levels, their satisfaction with support, their observations of changes in caregiving demands); and
- Questions that ask them to assess the participant's subjective experience.
For the latter, acknowledge the limitation: "We asked carers about their observations and impressions, recognising these may not fully represent participants' own perspectives." Better still, explore whether participants can contribute directly, even if in adapted formats or with support. Where participants lack capacity to consent, follow relevant jurisdictional guardianship frameworks and explain this clearly in your ethics application.
Scenario 3: The Family Support Program
A family support service works with households experiencing complex needs. The program coordinator is the main point of contact and observes how different family members engage with and benefit from the service. The evaluation includes interviews with coordinators about individual family members' progress.
The problem: The coordinator is both a participant (program delivery staff) and a third-party respondent (reporting on other participants). Their observations are filtered through their professional role and the power dynamics of service provision.
A possible approach: If coordinators' professional observations are genuinely necessary (e.g. for process evaluation or service improvement), be explicit about what you're collecting and why. Make clear in consent processes with families that program staff may be interviewed about the service, including how different family members have engaged. Give families opportunity to indicate if there are particular aspects of their experience they don't want discussed. In outputs, present coordinator perspectives as professional observations, not as definitive accounts of family experience. Where feasible, gather family members' own perspectives to provide a fuller picture.
When You Can't Find a Clear Answer
This is genuinely difficult territory, and if you're wrestling with whether your approach is appropriate, that's actually a good sign. It means you're thinking carefully rather than defaulting to convenience.
Some indicators that you're on solid ethical ground:
- You can clearly articulate why third-party data collection is necessary and proportionate;
- You've genuinely explored and ruled out direct participation alternatives
- The research interest genuinely includes the third party's own experience and perspective, not just their observations of someone else;
- You've considered and mitigated risks to participants who are the subject of third-party data;
- You've engaged with relevant communities or advocacy groups about the appropriateness of your approach; and
- You're transparent about limitations and don't present third-party accounts as equivalent to participants' own voices.
Conversely, warning signs that you need to consider:
- Your main justification is convenience or resource constraints;
- You haven't seriously explored direct participation options;
- The participant who is the subject of data collection has no awareness this is happening;
- You're asking third parties to report on internal states, preferences, or subjective experiences they can't actually know;
- There are significant power imbalances you haven't addressed; or
- You're uncomfortable with the idea of participants finding out what third parties said about them
If you're identifying the warning signs, then your approach may need to be reconsidered. Of course, you can also talk with us: our Expert Determination servicewas developed for these sorts of scenarios.
In Practice
When you're preparing your ethics application, be explicit about:
- Why you're using third-party respondents, demonstrating the choice is more than convenience;
- What safeguards you've built in, including how you're protecting participants who are the subject of discussion;
- What the relationship is between third parties and participants, acknowledging power dynamics and how you're managing them;
- How you've engaged with relevant communities, especially for culturally diverse populations where norms about representation may differ; and,
- What your limitations are, being upfront that third-party accounts are filtered through their own perspectives and experiences.
Our ethics committee will appreciate seeing that you've grappled with these questions rather than treating third-party data collection as a straightforward methodological choice.
Summary
The ethics of third-party data collection depend entirely on context: the nature of the relationship, the type of information being sought, the feasibility of alternatives, cultural norms, and the power dynamics at play.
But respect for persons means respecting their right to their own story. When someone else tells that story on their behalf, whether from necessity or convenience, we need to think very carefully about whether that's justified, how we're mitigating risks, and whether we've genuinely exhausted other options.
If you find yourself designing research that relies heavily on third parties describing participants' experiences, and you haven't asked yourself these hard questions, it's not too late to. Engaging in careful, honest reflection about whose voice you're centring and who has the right to speak helps ensure whether your research or evaluation design genuinely serves the people it's meant to benefit.
Still have questions? Get in touch - we're always happy to help!
For further guidance on research with people in dependent or unequal relationships, see Chapter 4.4 of the National Statement on Ethical Conduct in Human Research (2025). For Aboriginal and Torres Strait Islander research contexts, Chapter 4.7 of the National Statement and the AIATSIS Code of Ethics provide essential frameworks for understanding culturally appropriate approaches to representation and voice.
AI Disclosure: Initial drafts of the content for this article were prepared using Large Language Models with input from Iris Ethics staff who guided the scope and design. Subsequent revisions and final versions were developed and approved by Iris Ethics staff.