Learning snapshot
Ethical information collection and management
What are the ethical considerations when collecting information? Here, we look at the importance of gaining informed consent before collecting information from individuals participating in your initiative (hereafter called participants), and the ethical and legal considerations for storing, managing, and sharing the information collected.
Dr Wendy Simpson
Research and Impact Lead, Grants and Community Development, Lotterywest
Dr Gemma Bothe
Senior Manager Social Impact, Grants and Community Development, Lotterywest16 April 2025
Collecting information from participants
Is your organisation planning to collect information from members of the public, stakeholders or other individuals?
It might be while delivering your service, when evaluating a project or as part of your media and communications program, but at some stage, most organisations will have a need to collect information from their stakeholders. When collecting this information about, and from, others, it’s important to do so using ethical practices.
At its core, ethical practice is simply about putting yourself in the shoes of the person you are collecting information from and asking yourself, if you were in their position, would you be okay with how their information was being used?
To help you work through this question here are a few things to ask yourself:
- What are people or organisations agreeing to when they share information?
- What is informed consent to collect information?
- How do I get informed consent?
- How do I ethically store/manage information once I have collected it?
- Who should I be sharing information with once I have it?
Why should I care about ethics when collecting and sharing information?
Firstly, applying ethical principles in the collection of information is about protecting you, your organisation, and the people you are working with!
Establishing a sense of trust and preventing a breach of that trust is imperative, as once trust is lost it can be difficult to re-establish. If a stakeholder or participant feels that what you have done with their personal information is unethical, this can damage your reputation, and reduce that level of trust, resulting in people not wanting to engage with your organisation in future.
Alternatively, an organisation that has consistently demonstrated ethical practice in data collection will have established high levels of trust and have a solid reputation, often resulting in participants being more willing to share information.
Always endeavour to protect the participants from whom you are collecting data, in particular vulnerable people/groups. When providing services or collecting information about, or from, vulnerable people/groups, be respectful of the trust that they place in you and always be clear about the way their information will be used, and for what purpose.
Consider whether using the names or likenesses of participants is appropriate, as these actions could have significant consequences. For example, sharing the information of a person escaping a family and domestic violence situation without their consent could put them at risk.
In addition, take all possible precautions to prevent misuse of participants’ information, including protecting against cyber security breaches (think spam emails and viruses). If people who should not be able to access the information can, the information could be misused. This misuse could include email addresses being added to third party mailing lists, photos being published on websites without permission, or hackers selling personal details.
Consent to participate
Consent to participate in any kind of data collection activity should be given freely, with no pressure for participants to take part in the activity or to share information.
To obtain informed consent, easy to understand simple language should be used to ensure there are no misunderstandings.
Be sure to communicate ways information will be collected and used in your project. It can also be of benefit to find different ways of describing what you plan to do should there be a language barrier or if permission is needed from guardians, organisational custodians, or cultural custodians.
Providing translation or accessibility services is appropriate if your participants require them to be able to understand the information being provided.
Informed consent is required when collecting, storing, and using information about individuals or organisations. This includes information collected through:
- Mailing lists
- Surveys, workshops, focus groups, interviews
- Photos, or other likenesses of individuals
- Information provided by an individual during service delivery
Key information needed when seeking informed consent includes:
- Establishing the type of information being collected such as their likeness (e.g., photos), personal information (e.g., health information, mailing address, phone number), or their experiences or perceptions.
- Establishing how information will be collected and recorded (e.g., via interview, workshops or focus groups, surveys or form completion, photos etc.).
- Establishing who is collecting the information, and who will have access to the information.
- Communicating the voluntary nature of data collection and the right to withdraw at any time without the need to provide a reason, and without any impact on the participant.
- Ensuring the confidentiality and/or anonymity of the information collected and used.
- Communicating how the information will be stored, used or shared. This might include immediate uses such as service provision improvements, or future use including research and evaluation.
- Determining how and when the information will be destroyed, which usually aligns with organisational data management policies.
Informed consent can be included at the start of a form or survey. Consider asking participants to tick a box confirming they are aware of the information collection process and the use of their information. A separate consent form is commonly used for interviews and photos or video and audio recordings.
Storing and managing data
There are some important things to remember when collecting and managing someone else’s information. It is important to control access to personal data and limit access to people who need to see responses. One way to ensure this is to use secure storage with password protection. Avoid duplicating data. Storing data on personal computers, in Teams or other accessible shared drives, or on a USB, could result in confidential information being ‘leaked’ or compromised.
Other important information to remember
Make sure all data is de-identified
if that is part of the agreed consent. As this is not always possible for data collection such as mailing lists, photos, or information that requires contact details e.g., program/event registration – additional steps to keep this information secure should be put in place.
Do not reuse contact details
including names, address, phone numbers, emails for any other purpose beyond what was agreed, including reporting.
Check with your organisation
if a document and data destruction schedule and policy is already in place, and if so, align your practice with this policy and communicate this to participants.
Sharing information
Only use the information collected in ways that participants agreed to when they gave their informed consent. You could consider asking for consent to share the information in the following ways and uses:
- With the people you agreed to share it with
- Within your organisation
- With the person who provided the information (i.e., their personal data, interview transcript or survey results)
- Annual reports, KPIs, website, intranet
- Reports of your evaluation
- Conference or group presentations
- Funding reports and grant acquittals
- Cultural Custodians: Individuals or groups recognised as responsible for preserving and protecting the cultural values, traditions, and practices of a particular community or culture.
- Data Breach: Unauthorised access, use, or release of private, sensitive, or confidential information, often leading to misuse or compromise.
- Data Management Policy: Organisational guidelines and procedures for the collection, storage, sharing, and destruction of data to ensure compliance with ethical and legal standards.
- De-Identified Data: Information from which personal identifiers (e.g., names, addresses) have been removed to protect individual privacy.
- Ethical Practices: Actions guided by moral principles, ensuring fairness, respect, and transparency, particularly in interactions and decision-making.
- Evaluation: The systematic process of assessing the design, implementation, or outcomes of an initiative to determine its effectiveness, relevance, and impact.
- First Nations Communities: Indigenous groups recognised as the original inhabitants of a region, holding distinct cultural, social, and historical identities.
- Informed Consent: Permission granted by participants to collect, use, and manage their information, given freely with a clear understanding of its intended use.
- Likeness: Representation or image of an individual, such as in photographs, videos, or drawings.
- Mailing Lists: Databases of email addresses and/or contact information used for communication or dissemination of information.
- National Statement on Ethical Conduct in Human Research 2023: An Australian guideline that provides principles and guidance for ethical research involving human participants.
- Personal Data: Information that identifies or relates to an individual, such as name, address, health records, or contact details.
- Secure Storage: Practices and systems that ensure data is safely stored, protected by measures such as encryption, password protection, and restricted access.
- Stakeholders: Individuals, groups, or organisations with an interest in or impact from an initiative, project, or decision.
- Vulnerable Groups: Populations at a higher risk of harm or exploitation due to factors like age, socioeconomic status, health conditions, or social circumstances.
- Voluntary Participation: Participation in an activity or data collection based on free will, without coercion or obligation.
Additonal links and resources
-
The National Statement on Ethical Conduct
The governance, management, and ethics of information collection are guided by the National Statement on Ethical Conduct in Human Research 2023. This includes consent, data use, security, storage, and disposal.
-
Ethics in Evaluation factsheet
For more information about ethics in evaluation, visit this page at the Australian Institute of Family Studies.
-
Introducing Lotterywest’s new Grant Impact Guide
Additional links to resources are available at Lotterywest's Grant Impact Guide page on the Community Impact Hub.
-
WEBINAR - Ethics in Data Management and Collection
Watch the video
-
ECU Breaking the Silence Final Report 30 June 2021
This research gained consent from stakeholders.
-
Empowering communities through school engagement and yarning
Ethics clearance from the Australian Institute for Aboriginal and Torres Strait Islander Studies ensured research methodology was culturally appropriate.
Further reading
Find out how organisations used ethics clearance and informed consent in their projects.
Empowering communities through school engagement and yarning
See what worked. This project gained ethics clearance to ensure the research methodology was culturally appropriate.
Loneliness and adverse health outcomes
The ethics process was very complex, creating challenges for this study.
100 Families WA Report
Read how informed consent was used with participants to gain insights into hardship and disadvantage in WA.
Research Publication
To protect participants, informed consent was gained for participation in the research project and a second consent was gained for recording the yarning sessions.
Learn about wellbeing
Understand how your community is going to help you to better target and plan your project.
Ready to plan your project?
Understand your vision, plan your impact and report on the outcomes of your project with three easy interactive tools in the Community Impact Planner.
Acknowledgement of Country
The Western Australian Community Impact Hub acknowledges and pays respect to the Traditional Owners of the land on which we are based, the Whadjuk people of the Noongar Nation and extends that respect to all the Traditional Owners and Elders of this country. We recognise the significant importance of their cultural heritage, values and beliefs and how these contribute to the positive health and wellbeing of the whole community.