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Free Prior Informed Consent & Iterative consent – What do they mean and why are they so important to co-creation?

by | 12 Dec, 2022 | Blog, Collaboratory Podcast, Featured Collaboratory Podcast, Resources

The Collaboratory Conversation Series episode Community Engagement and Informed Consent – A Conversation with Azure Hermes talked about a couple of concepts that are really important ethical underpinnings to co-creative processes that work across differentials of power – the principles of Free, Prior & Informed Consent (FPIC) and Iterative Consent.  In this article we dive a bit deeper into these concepts and how the National Centre for Indigenous Genomics (NCIG)  have communicated and engaged with First Nations community members to achieve these principles in practice.  

What is Free, Prior & Informed Consent (FPIC)? 

Free, Prior & Informed Consent or FPIC is a right specifically pertaining to Indigenous peoples and is recognised in the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP). It allows people and groups to give or withhold consent to a project that may affect them. It also allows them to withdraw that consent at any stage. The Food and Agriculture Organisation of the United Nations promotes a useful definition from that spells out different parts of what constitute FPIC.

The concept of free prior and informed consent is now a basic pillar of ethical research and indeed ethical collaboration, not only with First Nations people. But the unfortunate reality is that many past and present projects did not gain consent of participants or those effected by them in ways laid out by the principals of FPIC. Globally this has meant that many collections and research archives that contain First Nations materials, as well as projects and policies that impact on First Nations communities, have been formed without documented free prior and informed consent. The work of cleaning up the relational and ethical messes caused by a lack of prior consent is a big aspect of the community engagement work needed today in order to be able to make use many such collections, or to enable projects to go ahead. A recent example in the Australian news of the significant impact that a lack of FPIC can lead to is the over turning of environmental approvals for a large industrial development in the Tiwi Islands because the courts recognised that “failed to ensure relevant parties were adequately consulted about the project”.

In NCIG’s work with genetic samples gathered from First Nations and Pacific peoples in the 1960’s and ’70’s, the task of giving cleaning up from processes where consent wasn’t properly gained has required time and honesty.

My role as community engagement coordinator is really going into community and being honest to begin with, right? I don’t hide behind the fact that these samples were taken without consent. I’m honest about that from the start. I let people know that these samples are in Canberra, I let them know that it’s highly likely that they did not, their loved one did not, or their parents did not provide consent for these samples. I give people the chance to work through what that actually means and how they feel about that.”

Azure Hermes, NCIG Director
 Community Engagement & Consent: A Conversation with Azure Hermes – 2022

For NCIG’s work to gain consent for continuing to keep samples in their collection, as well as for any potential research use of these samples, they have needed to share up-to-date information with Indigenous people across Australia about the genetic materials that were taken decades ago from them or their family members. This required translating technical scientific concepts into easily-understandable language and ideas. One way that NCIG did this was with an animation that told a visual story about how the samples had been collected, where they were now and what they may be used for in future (if consent was given). 

What is Iterative Consent and why is it an important addition to FPIC?

As we heard from Azure Hermes in the Collaboratory episode, “your prior informed consent doesn’t mean you give consent and then you give consent for everything”. Rather, a next step in enacting the principals of FPIC is to build in processes of Iterative Consent, where people can consent for specific uses of knowledge, materials or country they are connected to, and not have it assumed that consent is given for every potential future use. This process may need to happen multiple times as information and contexts change. 

In the NCIG example, processes of iterative consent are important as the genetic samples may be used in future for purposes as yet unforeseen. In this case, consent would need to be sought again, with updated information provided to study participants (or their family members) in order for them to decide if they will give consent again or not. 

As Azure described, “just because you give consent at that particular time, it doesn’t mean that you are giving consent for all research. NCIG is trying to put in place that you are giving consent to come into our repository. But if we have particular research projects, we still want you to think about whether that’s the type of research projects you want to be a part of.

As an example, if somebody comes in and says, “I want to do a study on kidney disease and I want to use samples from these six communities”, we give participants the space to be able to say, “yes, I, you know, I want my samples to be included in this research project”. Or if somebody comes in and says, “I wanna do a research project on why Aboriginal people have brown hair and brown eyes, and not blonde hair and blue eyes”, it gives people the chance to say, “no, this has no benefits to me at all. This is actually, you know, crappy piece of research. I don’t wanna be a part of it. No, you cannot use my sample.” So it’s giving that decision making power back to the communities.”

Azure Hermes, NCIG DirectorCommunity Engagement & Consent: A Conversation with Azure Hermes – 2022

Other examples of how iterative consent might work in practice is:

  • People might give consent for an object or art work they made to be held in a specific collection and used in a specific exhibition. If it was to be included in a different exhibition or display they, or their descendants, would need to give revised consent for it to be used and shown in that new context.


  • Consent might be given by a community for its traditional country to be used for certain types of development, like to build a solar array, but consent would need to be regained if the specific type of development proposal changed to use different technologies that came with different risks.

Of course, laws, ethical standards and protocols vary in different industries, contexts and jurisdictions, so while the principals of FPIC and Iterative consent are becoming socially and ethically expected (in contexts as wide ranging as the use of our data, to consent for sexual activity), the regulations and legal frameworks in organisations, states and international law are still catching up with the expectations of First Nations and many other people for how these principles are put into practice. But even without consent principles being enshrined in laws or organisational protocols it is important that we understand and enact them to the best of our abilities in how we do our co-creative work.

As NCIG Director Azure Hermes makes clear, the principles of FPIC and iterative consent are all about allowing people to make informed decisions and retain control over how knowledge, materials, practices or places which they have connection with are used. While enacting FPIC may take time, resources and a good measure of patience, gaining real informed consent lays foundations for future actions that are more robust and less likely to lead to conflict down the track, as well as opening pathways for future value way beyond the immediate timelines of a project or initiative.

When we talk about free prior and informed consent, it’s really making sure that people … weigh out the negatives to the good, and if the good still outweighs those negatives and they provide that consent, then that’s fantastic….

I remember my aunty saying to me that she kind of felt really privileged to be in a position where she could make a decision about her sample. She said, ‘my daughter died from epilepsy, unknown epilepsy’. She said she gave permission for her sample because she doesn’t want people to go through the same thing that she did with losing a child and research takes 30 to 40 years and you may not see any benefit in this at all, but she didn’t care. She said if there is a chance that someone will have a better understanding about a particular disease or a better understanding about medication, it was something she was willing to do.”

Azure Hermes, NCIG DirectorCommunity Engagement & Consent: A Conversation with Azure Hermes – 2022

Your prior informed consent doesn’t mean you give consent for everythingAzure Hermes Next steps in enacting @FreePriorInformedConsent are building in processes of Iterative Consent