Follow ethical standards
Ethics is deciding what the right thing to do could be. You will need to consider both the intended and unintended impact of your activity on participants with disability with ethics in mind. Your activity should follow strong ethical standards to make sure participants are treated well and their information is collected, used, and kept correctly.
Determining the need for ethics approval
Ethics approval processes are designed to protect both participants and researchers. You should:
- Always follow your organisation’s research and ethics policy. If unsure, seek legal advice.
- Consider the privacy and the ethical concerns around your planned activity or project. Refer to the Australian Privacy Principles and the Australian Code for the Responsible Conduct of Research.
- Determine whether you need formal ethical approval for the type of research you are conducting and the data you collect.
- Plan for the additional time and cost of a formal ethics approval process. For example, for compiling all required project documents.
- Give participants information about their rights and providing consent early.
- Provide ethics, consent, privacy, and data collection and storage information in accessible, alternative formats, such as Easy Read.
Relevant pages
Australian privacy principles (Office of the Australian Information Commissioner [OIAC])
Types of ethics approval
Human research in Australia is subject to the National Statement on Ethical Conduct in Human Research and the Australian Code for the Responsible Conduct of Research. You should:
- Read the sections about engaging with people with disability, particularly chapters 4.4 and 4.5 of the National Statement.
- Develop an application using the Human Research Ethics Application for submission to a human research ethics committee if you are conducting health and medical research.
- Consult the Guidelines Under Section 95 of the Privacy Act 1988 (s95 guidelines) if you are conducting medical research for a Commonwealth agency or the Guidelines Approved Under Section 95A of the Privacy Act 1988 (s95A guidelines) if you are conducting medical research for a private sector organisation to ensure your handling of personal information does not breach the Privacy Act 1988. (States and territories may also have their own privacy legislation or administrative codes of practice.)
Relevant pages
Australian code for the responsible conduct of research (NHMRC)
National Statement on Ethical Conduct in Human Research (NHMRC)
- Chapter 4.4: People highly dependent on medical care who may be unable to give consent
- Chapter 4.5: People with a cognitive impairment, an intellectual disability, or a mental illness
Human Research Ethics Application (HREA)
Applying for ethical (HREC) review (Australian Institute of Health and Welfare)
Guidelines approved under Section 95 of the Privacy Act 1988 (NHMRC)
Consent
All participants must give you their informed consent. When you ask people with disability to participate in your activity, you should:
- Provide participants clear consent information early to give them time to understand:
- the purpose of the research or activity
- information about the researcher
- what you want from them
- what you will do or are authorised to do with the information
- how you are minimising harm
- how you prioritise their safety
- what may happen during the research or activity
- where they can get help
- that participation is voluntary and how they can withdraw from the research or activity
- how you will protect the information they provide.
- Offer people with disability ways to get support to understand the information.
- Offer other ways for people with disability to get this information, such as through videos, Easy Read, Auslan, or translated into other languages.
- Offer different ways for people with disability to ask you questions, such as via a phone number or email address.
Relevant pages
Context: Follow good practice engagement principles
Design: Make participant experiences positive
Plan: Create accessible materials
Plan: Give participants clear information in advance
Chapter 2.2 General requirements for consent (National Statement)
NHMRC standardised participant information and consent forms (NHMRC)
Consent form builder tool (ResearchOps Community)
Data storage
Ensure your organisation is protecting the privacy and rights of people with disability by storing information safely. You must:
- Check if you are allowed to store data at all. For example, some ethics approvals mean you cannot keep people’s information.
- Follow best practice for data storage in your industry or your organisation’s process. This includes deleting data once the project is complete.
- Make sure you treat people’s information and data appropriately.
- Be clear and communicate with people with disability about:
- what information will be kept
- where that information will be kept
- who will have access it
- how long you will keep it.
- Give people the option to change their minds or have their information deleted.
Relevant pages
Follow up: Quote participants accurately
5 principles of data ethics for businesses (Harvard Business School Online)
Guide to data analytics and the Australian Privacy Principles (OAIC)