This chapter uses material from an open access human research ethics e-course developed with the support of an Open Access Teaching Award from the University of Southern Queensland. The original authors were Tanya Machin, Charlotte Brownlow, and Annmaree Jackson. The e-course can be found at https://open.usq.edu.au/course/view.php?id=400 or by directly contacting Tanya at Tanya.Machin@usq.edu.au or Charlotte at Charlotte.Brownlow@usq.edu.au.
Our aim in this chapter is to provide you with a broad overview of the different ethical codes used in Australia that psychological scientists and psychologists use to guide their work. As a psychology student you’re no doubt used to thinking about ethics as this underpins much of the foundational knowledge you learn in your degree. However, you may be unfamiliar with why ethics are important (although we hope not!) or when or how ethical codes are used. The first ethical code was developed by the National Health and Medical Research Council (NHMRC) and is known as The National Statement on Ethical Conduct in Human Research (NHMRC, 2018b) or the ‘NHMRC code’ or simply ‘the code’. This document consists of a series of guidelines that all researchers – including psychological scientists – need to follow. Australia is unique in that our researchers are governed by this code, but our psychologists are required to adhere to a different ethical code developed by the Australian Psychological Society. Countries such as the United Kingdom or Canada have a combined professional and research code of ethics.
To help you work your way through the chapter, we’ve divided it into several sections, including: ‘Why Do We Have Research Ethics?’, ‘Research Methodology and Risk Management’, ‘Recruitment and Data Collection’, ‘Data and Information Management’, and ‘Merit, Integrity, and Monitoring’. We will then provide a brief overview of the APS code to close the chapter off. Throughout the chapter, we’ll provide some case studies, pose questions for you to reflect on, and perhaps even test your ethical knowledge! Finally, the information contained in this chapter comes from an open access e-course that we wrote. If you have any questions about the e-course or want to use it in your course or program, please contact the authors directly.
Why do we have research ethics?
The history of human experimentation is sometimes considered to be a dark one, with many documented examples of ill-conceived and inhumane medical and psychological experimentation on human beings. While considered ‘unethical’ by today’s standards, these experiments have led to the development and refinement of various national and international laws and guidelines that govern ethical human research.
In 1932, the United States of America Public Health Service (PHS) began a twelve-month experiment in Tuskegee, Alabama to study the natural course of untreated syphilis in African American men. The research aimed to determine whether syphilis caused cardiovascular disease more often than neurological damage and to determine if the course of syphilis was different between black and white men. When the study began, there was no known cure for syphilis.
From an ethical perspective, this research provides an excellent case study on how NOT to conduct research responsibly. Researchers initially recruited 600 men: 399 with syphilis and 201 who did not have syphilis. Poor, uneducated African American men were targeted for participation (Centers for Disease Control and Prevention [CDC] (2021)). As an ‘incentive’ to join research, free medical exams, meals, and burial insurance were offered. The PHS never told the participants they were part of a syphilis study – some men thoughts they were being treated for rheumatism or bad stomachs (Brown, 2017). When penicillin became available as the recommended treatment in 1945, the treatment was withheld from participants (Tuskegee University, n.d). The study was initially supposed to be conducted over a six-month period, however, the study ran for 40 years without subsequent ethical review despite the introduction of numerous international ethical guideline documents.
When Dr John Heller, Director of the PHS Venereal Diseases Unit (1943 to 1948), was interviewed about the research project in 1976, he reflected that the men were considered purely as subjects in a study rather than patients who were in need of treatment.
What Did We Learn?
By today’s standards, this research would not be approved by an ethical review body on the basis of:
- lack of voluntary and informed consent processes
- inappropriate use of deception in various stages of research conduct
- use of inappropriate incentives and payments that have likely induced and encouraged the participants to take risks by participating in the research
- withholding known treatments that would benefit the participant once available
- knowingly permitting transmission of the disease to other non-participant individuals (e.g., wives and children of the participant men)
- lack of reporting and monitoring processes.
Video 4.1 provides a 10-minute summary of the Tuskagee Study.
Video 4.1: The Tuskegee Syphilis Study
Governance of Human Research
Today research involving humans is tightly governed. Governance of human research is about establishing both rights for participants in research and the responsibilities of those conducting the research (that’s you as a researcher and your research institution). This can include:
- ethical review and approval
- compliance with legislation, regulations, guidelines and codes of practice
- legal matters – including contracts – and indemnity/insurance frameworks
- financial management, risk management, and site-specific assessment
- institutional policies and procedures for responsible research conduct and managing research misconduct
- management of collaborative research
- research requirements (DIIS, 2005).
Research in Australia is normally conducted under the auspices of the Australian Code for the Responsible Conduct of Research (NHMRC, 2018) and the National Statement on Ethical Conduct in Human Research, (NHMCR, 2018b). Specific national and state legislation may also apply in the protection of participant rights, including relevant privacy laws. Depending on your targeted research population, specific reviews, approvals, and guidelines may also be required – for example, when working with Aboriginal and Torres Strait Islander peoples and communities. You’re responsible for ensuring you’re aware of and comply with the relevant legal and institutional requirements when conducting your research.
The National Statement on Ethical Conduct in Human Research (NHMRC, 2018b) outlines four guiding principles for ethical research. You may want to compare your own research (or research you read about in journal articles) against these checklists to ensure you’re addressing the four guiding principles detailed below.
Research Merit and Integrity
Your research has merit if it is:
- justifiable by its potential benefit – e.g., contribution to knowledge and understanding, improved social welfare and individual wellbeing, within the skills and expertise of researchers
- designed/developed using methods appropriate for achieving the aims of the proposal
- based on a thorough study of the current literature (as well as previous studies)
- designed to ensure respect for the participants is not compromised by the aims of the research by the way it is carried out or by the results
- conducted or supervised by persons or teams with experience, qualifications, and competence that are appropriate for the research.
You are conducting your research with integrity if you and the research team are committed to:
- searching for knowledge and understanding
- following recognised principles of research conduct
- conducting the research honestly
- disseminating and communicating the results (whether favourable or unfavourable) in ways that permit scrutiny and contribute to public knowledge and understanding.
Your research is just if you:
- select, exclude, and include categories of participants fairly, and accurately describe the process in the results of your research
- recruit participants fairly
- ensure there is no unfair burden of participation in research on any particular group(s)
- fairly distribute the benefits of participating in the research
- do not exploit participants in the conduct of your research
- provide fair access to the benefits of the research
- make the research outcomes accessible to research participants in a way that is timely and clear.
Your research demonstrates beneficence if you:
- ensure there is likely benefit of the research to the participants, to the wider community, or both
- assess that the likely benefit of the results justifies any risk of harm or discomfort to the participants
- have designed the research to minimise the risk of harms or discomfort to the participants
- clarify for the participants the potential benefits and the risks of the research
- ensure the welfare of the participants (in the conduct of the research)
- suspend the research where the risks to participants are no longer justified by the potential benefits
- consider whether research should be discontinued or at least modified (in the event it’s suspended)
- notify the review body promptly if you do suspend the research.
Your research demonstrates respect if you:
- abide by the values of research merit and integrity, justice, and beneficence
- have due regard for the welfare, beliefs, perceptions, customs, and cultural heritage of individual (and collective) participants and groups involved in the research
- respect the privacy, confidentiality, and cultural sensitivities of the participants
- fulfil any specific agreements made with participants or their communities
- give due scope throughout the research process to the capacity of individuals to make their own decisions
- empower individuals where possible and protect them as necessary where they may be unable to make their own decisions or have diminished capacity to do so.
Processes of Ethical Review in Australia
Ethical review of human research can be undertaken at various levels, according to the degree of risk involved in the research, and the levels of review established at a research institution. In all cases, the ethical review of human research is undertaken in accordance with the guiding ethical principles and process of research governance and ethical review outlined within the National Statement on Ethical Conduct in Human Research (2018b). With regard to the assessment of risk involved in research this involves:
- identifying any risks
- gauging their probability and severity
- assessing the extent to which they can be minimised
- determining whether they are justified by the potential benefits of the research
- determining how they can be managed.
You’ll be involved in identifying, gauging, minimising, and managing any risks involved in your project – normally as part of preparing and submitting your ethics application. The Human Research Ethics Committee (HREC) – or other ethical review bodies – will review your research proposal to make a judgement on whether the risks are justified by the potential benefits. Individuals you approach to participate in your research will also assess the risks associated with your research as they decide whether or not they consent to participate.
Research methodology and risk management
The research methodology you adopt for your project will be crucial in considering ethical risk and the management of this. There are two broad types of research – quantitative or qualitative methods – and both types of methods have different advantages and disadvantages. The choice of which method you will use is determined by your research question. This topic will explore some of the common approaches to research and some of the associated ethical issues to consider when adopting these.
Research can have an impact on participants both during the conduct of the research and after the research has been completed as they reflect upon their experience of participation (mental) and recovery from any physical demands (e.g., donation of human biospecimens, physical testing, etc.). While this list of potential risks is not exhaustive, some of the common risks are identified below. Risk of participation to a participant (or you and the research team) is generally classified along a continuum, with ‘Inconvenience’ – for activities such as the time required to fill out a survey or take part in an interview – at the low end of the scale, and ‘Harm’ – at the high end of the scale. ‘Discomfort’ is somewhere in the middle, and this can include both physical and psychological aspects. This could include side effects of drugs that participants may need to take in the research or even anxiety when attending a research interview.
All research must have a benefit that either directly or indirectly benefits individuals, groups, or society as a whole. Benefits of research can include gains in specific knowledge, improved individual wellbeing, or increases in the skill or expertise of an individual, group, or organisation. While your research may have no immediate benefit to the participants, it’s worth considering whether participants can benefit from self-reflection on the research topic. For example, you may be interested in parenting styles and discipline, and while your research may not have an immediate benefit to this group of participants, they may benefit from self-reflecting on their own parenting practices.
Much of the research conducted using human participants will have some degree of remaining risk to a participant or the research, despite any mitigation strategies you’ve applied in the research design phase. Even if the remaining risk is minimal, it’s up to you to develop clear strategies for managing these remaining risks should they eventuate. This is not always an easy task as it can be difficult for you to know if a particular topic will cause distress or harm for an individual participant. Therefore, it’s important for you to think carefully about how you’ll support a participant if they become upset or distressed. You’ll also need to think carefully about government regulations and guidelines.
You may be interviewing children about their television viewing habits when the child reveals information about child abuse. Would you know what to do in this situation? Do you have a legal obligation to report this disclosure? Who can you tell to protect the child while maintaining participant confidentiality?
Finally, when thinking about risks and benefits of the research, you’ll need to consider the following practical elements:
- What is the research theme or question that this project is designed to explore?
- Why is the exploration of this theme or answer to this question worth pursuing?
- How will the planned methodology and methods explore the theme or achieve the aims of the research?
There are many different research methodologies, and the methodology you choose will depend on the research aims, questions, and/or hypotheses.
One of the most common methods for conducting research is surveys or questionnaires. In the past, participants would often complete pen-and-paper surveys and either hand them to the researcher or mail the survey to the researcher. Nowadays most researchers would use online survey software such as Qualtrics or Survey Monkey (it’s always best to check with your university to see what survey software they recommend – at USQ we use the USQ Survey Tool, which was developed from LimeSurvey). Surveys/questionnaires can be quantitative when questions use a closed question format (e.g., Likert scales) or can be qualitative when an open question format is used. Many surveys/questionnaires can contain a combination of the two types of questions (mixed method).
Ethical risks to consider:
- How long will it take participants to complete the survey?
- Could the content of the questions cause/trigger psychological harms, economic harms, or legal harms to participants?
- Could the research cause social harm to participants? Is your survey/questionnaire voluntary and anonymous?
- How secure is the online survey software?
- Where will the data be collected, stored, and transferred? You’ll need to check the terms and conditions of the software licence to ensure you have full access and ownership of the data and are aware of relevant privacy laws.
- Make sure you have permission to use any measures or scales that you want to include in your survey or questionnaire – seek permission from the copyright owner as required.
- Ensure you have sufficient qualifications and/or experience to administer and/or analyse the data from the survey or questionnaire if this is a standardised test or test bank.
Your grandfather provided a human biospecimen 50 years ago for a research project. Advances in medical science mean that it’s now possible to predict with accuracy that you’ll acquire a certain illness. Would you feel comfortable with this information being published? Would you want to know this information?
There are many different research methodologies, and the methodology you choose will depend on the research aims, questions, and/or hypotheses. A strength of qualitative research is that it permits a participant to describe their experiences in ways that are meaningful to them, rather than to group their experience using research-derived classifications (Shaughnessy et al. , 2006).
Interviews involve conducting discussions with a small number of participants to explore a particular phenomenon of interest. Typically, there are three different types of interviews:
- structured interviews where there is a set of predetermined questions that all participants answer in the same order without any variation to the questions
- unstructured interviews where there are no predetermined questions, and the interview is quite informal and unstructured
- semi-structured interviews contain elements from both the structured and unstructured interviews. That is, there are some predetermined questions, but the interviewer can change the order of the questions or ask additional questions for further clarification or to expand on an issue that arises during the interview.
Ethical risks to consider:
- It’s important to protect your participants’ identities, and this may be done through a process to remove any identifying information, such as replacing a participant’s name with the use of a pseudonym.
- Length of time it takes a participant to complete the interview. This might vary from 10 minutes to a couple of hours. Please try and keep interviews under one hour if you can and offer your participant breaks, water, or snacks if they need them.
- Talking to another person can arouse people’s emotions, and so you may need to consider this risk. That is, you’ll need to consider the content of the questions you’re asking: could they cause/trigger psychological harms, economic harms, or legal harms? Participants may also want to stop the interview if they find the questions distressing or upsetting. If you’re uncertain about whether a participant wants to continue – ask them. If you’re in doubt, you’ll need to stop data collection, contact your supervisors or other members of the research team, and you may need to make a report to your research institution’s ethics office. Remember, if a participant asks to stop an interview you must not under any circumstance try and cajole them into continuing.
- As a researcher, you’ll need to reflect on whether you have the skills to deal with an upset participant. Some topics should be left to interviewers with skills in psychology or counselling.
- Plan ahead and include information about appropriate referral services in the participant information sheet, even if you do not personally think a topic is distressing.
Recruitment and data collection
Recruiting participants in responsible ways is a core part of the research process and something to which careful attention is paid during assessment of the research ethics of a project. This topic will focus on the responsible recruitment of research participants and the collection of data from individuals.
Recruitment of Research Participants
The strategies you use to recruit your participants will be varied, and you’ll need to think carefully about the research methodology you’ve chosen and who your participants are. For example, are you approaching your work from a quantitative perspective? If so, then you’ll need to gather data from lots of participants and therefore your recruitment will need to be broad if you’re trying to take a sample that could be considered representative of a wider population.
If you’re drawing on qualitative methodologies, then your approach might be different in that you’ll likely be focusing on a much smaller number of participants who have a shared experience of a particular phenomenon and are therefore looking for a more homogenous sample. Your recruitment, in this case, would be more targeted.
You also need to carefully consider your inclusion and exclusion criteria for your participants. Do you, for example, want to focus on a particular age group, occupation, or social class? These criteria need to be made explicit in your application form to enable an accurate assessment of the risks associated with your research.
The strategies you choose to recruit your participants’ will also carry different levels of risk, and these need to be considered as part of your research design and ethics reflections.
Recruiting people who you know, or friends of friends has the benefit of more straightforward access to your participants. However, one thing to consider if you’re planning to recruit participants through this strategy is social risk. Do the people who you approach feel obliged in some way to take part in the research? Will your relationship with them be compromised in any way if they either refuse to take part in the research or don’t provide the expected responses? Are these participants’ fellow employees within a company, for example, and are there issues of confidentiality and future impacts on working relationships that need to be considered?
These issues will, of course, be influenced again by your research design. If you’re planning a quantitative survey that is anonymous then the social risks will be reduced. However, if you’re planning to interview participants about a sensitive or personal topic then the social risks will be considered higher.
Some participants are more vulnerable than others in the research process, and as part of your ethics application, you’ll be asked to carefully consider who your target participants are and whether these comprise what are considered a vulnerable population. Such populations include research with a pregnant woman or foetus, children, people with cognitive impairment or mental illness, people considered to be a forensic or involuntary patient, people with impaired capacity for communication, incarcerated individuals or people on parole, those highly dependent on medical care or who are in hospital, military personnel or veterans, Aboriginal and Torres Strait Islander peoples, people in other countries or who would consider English to be a second language, and those who would not usually be considered vulnerable but would be considered vulnerable in the context of the proposed research project.
Children can provide a wealth of important information, but due to their age and cognitive immaturity, special attention needs to be given to safeguarding them in their participation in research. One crucial element is that of consent, which we’ll discuss a bit later in the chapter. Care and attention also need to ensure that the rights of children are protected in terms of confidentiality and potential coercion into participation in projects.
Research that is undertaken within schools may require the additional approval of the education governing body, and therefore careful attention needs to be paid to this in the research planning stages. Also, think carefully about the tasks you’re requiring the children to do. If a child (or their parents) does not consent to taking part in a school-based activity that will comprise the research, what equitable activity will you provide for them to do instead?
There is great diversity across the many Aboriginal and Torres Strait Islander cultures and societies. Application of core values and cultural and local protocols should be determined by the Aboriginal and Torres Strait Islander communities or groups involved in the research. This means you need to engage with the people or communities you want to research to discuss your proposed research and agree to the best way forward prior to seeking your ethical approval.
Unfortunately, that didn’t always occur in the past. Consider, for example, the Cambridge anthropology expedition to the Torres Strait that took place in the late nineteenth century, or later research with indigenous groups that had little contact with white Australian culture but were given tests of cognitive ability without considering how constructs such as intelligence may be expressed in different cultural settings (Dudgeon et al., 2014). In 2016, at the national Australian Psychological Society conference, the APS acknowledged the role psychology played in the mistreatment and erosion of Aboriginal and Torres Strait Islander culture.
It’s therefore important that if you’re undertaking research with Aboriginal and Torres Strait Islanders, you think about the research collaboratively. You may find the Ethical Conduct in Research With Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders (NHRMC, 2018a) informative.
If you’re undertaking health research that is targeting Aboriginal and Torres Strait Islander peoples and communities, you must consult the above guidelines and may find the following useful: Keeping Research on Track II (NHMRC, 2018d) and the Guidelines for Ethical Research in Australian Indigenous Studies (Australian Institute of Aboriginal and Torres Strait Islander Studies [AIATSIS], 2012).
When you think of obtaining consent, what comes to mind? You may indicate that it could involve signing a consent form prior to taking part in the research. While this is a common component of obtaining consent, this may not be suitable – or even practical – if you propose to administer an online survey. Therefore, a well-designed consent strategy will need to be tailored to your potential participants and fit with your research methodology and research methods. Consent should also be viewed as a process, rather than a single point in time event. That is, obtaining consent may be a component of the processes you undertake when consulting, engaging, and negotiating to prepare for your research conduct. This will be especially relevant in the context of research involving Aboriginal and Torres Strait Islander peoples and communities.
The requirement for consent is a relatively new concept, having evolved predominantly through unscrupulous researchers using a participant as a means to an end – for example, the Tuskegee researchers we discussed earlier in the chapter. Subsequently, international and national guidelines, such as the Belmont Report (National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research, 2012) and the National Statement on Ethical Conduct in Human Research, 2007 (updated 2018) (NHMRC, 2018b) have been produced to empower and protect participants to make an informed decision about their participation in research.
Elements of Consent
When obtaining consent from a participant, you need to ensure that it’s provided voluntarily. That is, that the individual has agreed to take part in the research as a result of having being provided sufficient information, understood that information, and not been coerced (or felt pressured), nor overly enticed to partake (through inappropriate incentive or reward).
This raises a number of decision points that you’ll need to work through, for example:
- How much information do I need to provide about the study?
- How will I obtain voluntary participation?
- Who will be involved in recruiting the participants?
- How will I ascertain if the participant understands the information I’ve provided about the project?
- Does the participant have any expectations about the outcomes of the project – for example, in medical research, will they be expecting treatment of a known condition or illness, versus understanding they’re participating in research and may be assigned to a control (i.e., no treatment group)?
- Who needs to be involved in the decision to provide consent? E.g., Will all participants have the capacity for understanding and/or the legal capacity to provide consent? If not, when do others need to be involved in this decision? This would involve situations where the participant lacks the capacity to provide consent, e.g., elderly person with dementia.
Normally, ethical review bodies like to see that you can demonstrate that a participant in your research has provided consent. It’s therefore worth considering how you’ve determined the participant has the sufficient capacity to give their consent to take part in the research and how you will document this. Where written consent from a healthy adult participant is provided, this would not normally be a problem. However, for some more sensitive research topics where participants may be reluctant to provide their name or signature, you may need to consider an alternative consent strategy to the traditional written or recorded approach to protect the privacy and confidentiality of your participant. Similarly, if you’re working with children and young people, or with individuals who may be unable to give consent because they’re temporarily or permanently incapable of comprehending their situation or of communicating about it, you’ll need to develop a consent strategy. This strategy will need to empower these individuals to be involved in the decision to participate as much as they are able. You’ll also need to consider who else may need to be involved to provide the required ethical and legal consent. In some cases, such as physical or mental health, participants may not be able to provide consent to participate in the research. For example, if you wanted to observe a person with end-stage dementia they would be unable to give consent, however, an appropriate surrogate – such as someone with a legal power of attorney – may be able to give consent on their behalf. Sometimes people may be temporarily unable to give consent. For instance, if they’re under the influence of drugs or alcohol. Being able to give consent is different when considering research with child participants – children are not assumed to be incompetent due to their age, but there may be additional steps you need to take for children to give their consent. In some cases – for example, research that is conducted in medical care settings such as neonatal intensive care, terminal care, or emergency and intensive care – relevant jurisdictional laws will also need to be considered.
Data and information management
In your ethics application, you’ll need to think critically about the issues of data collection, use, and management of data and information. You will also need to consider ethical issues related to the generation, collection, access, use, analysis, disclosure, storage, retention, disposal, sharing and re-use of data and information. This will be the focus of this section.
Information Versus Research Data Versus Primary Materials
Data generally refers to bits of information. Data can also refer to raw data, cleaned data, transformed data, summary data, and/or metadata (data about data). Data can also refer to research outputs and outcomes. Information, on the other hand, generally refers to data that has been interpreted, analysed, or contextualised, and can take many different forms. You may also see questions in an ethics application about primary materials. This typically refers to physical objects acquired through a process of scholarly investigation from which data may be derived. This may include objects such as ore or biological materials, but also questionnaires, recordings, artworks, and photographs.
Some examples of research data and primary materials can include, but are not limited to:
- what participants say in interviews, focus groups, questionnaires/surveys, personal histories and biographies
- images, audio recordings, and other audiovisual materials
- records generated for administrative purposes (e.g., billing, service provision, etc.) or as required by legislation (e.g., disease notification)
- digital information generated directly by a population through their use of mobile devices and the internet (e.g., Twitter feeds)
- physical specimens or artefacts
- information or reports generated by analysis of existing personal information (from clinical, organisational, social, observational or other sources)
- results from experimental testing and investigations
- information derived from human biospecimens such as blood, bone, muscle, and urine.
It’s quite common for people to get confused between research methods and primary materials in their ethics application. It’s really important when completing your ethics application that you clearly articulate the context. For example, are you writing about a questionnaire as a research method for obtaining research data, or is the questionnaire the primary material (i.e., the survey instrument)? Remember that reviewers of your application need to be able to understand what you’re trying to say and therefore it’s important to use the correct terminology.
Identification of Information
Information is identifiable if someone is able to identify an individual from information that is included in a thesis or journal article. Types of identifiable information include names, date of birth, address, images or photos, or group affiliation.
Re-identifiable information is information that has had any personal identifiers removed and replaced with a pseudonym and/or a code. Even with these types of precautions, it’s potentially still possible to re-identify that person. For example, you may be interviewing employees at Company X about their workplace health and safety. Company X may only have 20 employees and so it’s possible that some of their individual comments or responses could reveal their identify to people who know the employees at Company X.
No doubt you’ve heard (and most likely read) the term ‘de-identified’. However, ethical review boards prefer the use of either identifiable, re-identifiable, or non-identifiable. This is because the term de-identified can be ambiguous in its meaning. For example, are you proposing that you’ll run a process to remove any personal identifiers from research data/information you collect, to protect an individual’s privacy? Or do you mean that you have collected the information without any personal information in the first place? Many researchers use the term to indicate that they will ‘de-identify’ the participants, which is incorrect, whereas non-identifiable information is data that has never had any individual identifiers or that a process had been applied to to permanently removed any personally identifying information.
It’s also important to remember that the removal of personal identifiers may or may not be ethically required and some research projects may legitimately require the retention of personal identifiers. For example, if you were conducting biographic research into the bullying and subsequent suicide of Charlotte Dawson, you would want to include any personally identifying information such as tweets she made to internet trolls.
Personal Identification and the Law
As an ethical researcher, you’re no doubt thinking about how you can protect the privacy of your participants. In Australia, a participant’s personal information is protected by law under the Privacy Act (1988). Personal information is not just limited to information about an individual’s private or family life, but also extends to any information or opinion that is about that person or from which they can be reasonably identified (Office of the Australian Information Commissioner [OIAC], 2017). This can include information or opinion about:
- racial or ethnic origin
- political opinions
- religious beliefs
- sexual orientation
- criminal records
- health information
- credit information
- employee record information
- Tax File Number (TFN) information.
Note that this is regardless of whether personal information or opinion is also included within the scope of the Privacy Act (1988), and whether it’s recorded in a material form (or not). So, while the definition of privacy can be quite broad, it’s important that you consider how you collect, use, disseminate, store, and re-use information for research purposes.
To Identify or Not Identify?
You may think it would be simpler to remove any personal information from your research data or information and that would then reduce or eliminate the risk of being able to identify or re-identify any of your participants. In this way, their privacy would be now protected. Right?
Well… the answer is – it depends! There are some research methodologies where it’s entirely appropriate that others know who your research participants were. For example, if you need to match participant responses for questionnaires conducted at two different time points. It’s important to understand that the nature of identifiability can (and often does) change as you collect, use, analyse, disseminate research findings and store your research data and information. For example, data or information might initially be collected in a form that could identify individuals, then coded for analysis and connection to other collected data or information, and then once all the data or information has been collected, the code key might be destroyed, rendering the data or information anonymous.
It’s also worth considering how your participant may want to be represented throughout the research process. Would they be happy to be ‘anonymised’ or would they prefer for their thoughts and opinions to be heard? If you’re researching a sensitive topic that may have repercussions for a participant’s social or work relationships if their identity was known, then you’ll need to discuss this with your participant as well as manage any perceived risk associated with each option. As you can see, there are a lot of decisions you’ll need to make when considering how to manage this aspect of your research project.
The risks related to the identifiability of data and information in research are greatest when the identity of a specific person can reasonably be determined by reference to a specific identifier or a combination of identifiers. This situation may be the case when your recruited participants are part of a small population. This means you should take care in how you report your findings and will need to consider how much detail you provide around things like physical locations, specific recruitment groups, or associated organisations. For example, if you report that school principals from Catholic Education high schools in Central Queensland participated in your study, it may be well known within this community that there are only three schools that would fit this criteria. Therefore, it may not be too hard to link the opinions of the participants reported in your study to the school principals who work in those communities.
Risks may also arise where identifiers have been removed from the data or information and replaced by a code, but where it remains possible to re-identify a specific individual (by cracking the code or linking data to other data sets that contain identifiers). The technology that’s currently available (as well as what may be available in the future) may create new risks for data and/or information that was never labelled with individual identifiers, or from which identifiers have been permanently removed. For example, face recognition software means that people can be automatically identified without providing any specific permission.
Identifiability may also reflect features of the project, such as the nature of the participant sample. Specifically thinking about whether your data includes high-profile individuals or members of small communities versus larger populations. It’s also important to remember that large datasets are not immune to the risk of having participants re-identified.
Privacy, Confidentiality, and Anonymity
Privacy focuses on protecting the personal information of a participant that has taken part in your research project. This is not only an Australian requirement but complies with international laws. Confidentiality is different to privacy and focuses on the obligation of researchers to only use the private information provided to you by a participant for the purpose for which consent was given to you. This is both a moral and legal obligation, and depends on several factors, including the nature of the research and the promises you’ve given to the participants, along with any professional requirements you may need to fulfil. For example, you would typically outline the details of what data and information you plan to collect, use, disseminate, and re-use in an information sheet provided to participants before they take part in your research so they can then give their informed consent to participate. You must then abide by those details to maintain the requirements of confidentiality.
Some professions, however, are legally responsible for reporting certain information if they’re made aware of it. For example, if a teacher, psychologist, or counsellor becomes aware of child abuse, risk of self-harm, or harm to others, this information must be reported. It’s important to know your legal and professional responsibilities to report such information, who you report this information to, the appropriate process that should be followed, and when you can’t keep this information private. You must also inform your participants of these details, and this information is normally found in the information sheet.
When information is collected anonymously from a participant, no personally identifying or re-identifying information is provided. Anonymity, therefore, requires that the identity of a participant is protected because it’s not known to anybody either within or outside the research team. A good example would be when a participant completes an anonymous online questionnaire. Anonymity does not mean that you will not report any identifying information – in many cases you will report some details such as age range of your participants.
In some situations, you may not be able to ensure participants’ confidentiality or anonymity. For example, due to the nature of participating in a focus group, it’s impossible for you to guarantee that a participant’s confidentiality will be protected as there are other people present in the focus group. While you may ask the other participants to keep the discussions or other members in the focus groups confidential, in reality you can’t make someone keep this information confidential. To minimise these risks you could include information within the participant information reminding participants to keep details of the focus group confidential and reiterate this at the commencement of the focus group discussion.
As a budding researcher, it’s important that you develop a data management plan that addresses issues related to the generation, collection, access, use, analysis, disclosure, storage, retention, disposal, sharing and re-use of data and information, as well as strategies for minimising risk. Your plan should be developed as early as possible in the research process and should include, but not be limited to, details regarding:
- physical, network, system security and any other technological security measures
- policies and procedures
- contractual and licensing arrangements and confidentiality agreements
- training for members of the project team and others, as appropriate
- the form in which the data or information will be stored during and after the project
- the purposes for which the data or information will be used and/or disclosed
- who owns the copyright and intellectual property
- who will be responsible for managing the data (data custodian)
- the conditions under which access to the data or information may be granted to others
- how the data will be shared for future use
- what information from the data management plan, if any, needs to be communicated to potential participants.
As a researcher, you will need to adopt methods to reduce the risk of identification during the collection, analysis and storage of data and information. Methods you may use include:
- minimising the number of variables collected from each participant
- separation and separate storage of identifiers and content information
- separating the roles of those responsible for the management of identifiers and those responsible for analysing content.
Data available on the internet can range from information that’s fully in the public domain to information that’s publicly available but that the creator or poster may consider private.
If you’re using information from social media in your research, you’ll need to consider:
- Is the information in the public or a private domain?
- Is permission required from a webpage, group administrator, or a specific person prior to using the data for research purposes?
- Do the terms and conditions of the webpage allow your research project to be conducted? The onus is on you to check the terms and conditions of each webpage to ensure you’re acting ethically within those guidelines.
- Is the individual who posted the information to a specific site likely to understand that that information could be accessed for research purposes?
How Long Do I Store My Research Data and Information?
Most universities and research institutions will have guidelines outlining their requirements for where data is stored, how long data is stored for, and the security and storage of the data. Typically, there are two stages of data storage: data collection and project completion.
While many people think that once a project is completed, they have to destroy the data, this is actually not the case at all. Instead, there are legally required retention periods for each state and territory across Australia, but a good rule of thumb is to keep the data for as long as it’s practical and responsible to do so. This is particularly helpful if you decide a year or two after the project to publish your research and you need to run additional analyses. If you’re working on a project with others, you’ll also need to consider whether others may want to work with the data in the future and who should retain a copy of the data file.
However, there is a minimum retention period that you’re required to comply with. Generally, research data must be retained for a minimum of five years after the project concludes or is abandoned. However, particular aspects of your research project – such as signed consent forms – may need to be retained for a longer period, e.g., 15 years in Queensland. If your research is significant or results in a patent, the data must be retained for a longer period. Research data from clinical trials has a higher retention requirement again, and some historical-based research may need to be retained indefinitely. It’s your responsibility to review the requirements for the type of research you’re undertaking and to make the appropriate short- and long-term arrangements for the data to be appropriately stored for the minimum required period. For example, if you’re a student working on a project the data should always be given to your supervisor at the completion of your project.
How Do I Store My Research Data and Information?
Research data and information must be kept secure and stored in conditions that are designed to reduce deterioration of the data. Most universities and research institutions will have guidelines for what are considered appropriate conditions, although these will also normally comply with the security and privacy requirements in Australia. While many researchers may use USB drives to store their data, this is NOT considered secure. Unfortunately, we’ve met too many student researchers whose data has been lost because of corrupted or lost USB drives, including when they go through the wash!
It’s therefore considered good research practice to store your research data in at least three separate ways. We recommend you consider using cloud storage to store research data during the active phase of your project as most universities provide free cloud storage for their students. However, you’ll need to think about the following questions when you’re choosing your data storage solutions:
- If you’re using cloud storage to store your date, consider selecting a cloud storage system based in Australia. This ensures the data is protected under Australian laws and regulations.
- Is the storage system appropriate for the data? For example, if you’re collecting sensitive health information or data, you may need additional security protocols.
- Is the storage system appropriate for the life of the research project?
- Can access be shared with other researchers if this is required? This includes other research team members during data collection, and other researchers into the future (but only if you’ve sought consent for the future use of the data in your ethical application).
All information on how you plan to collect, use, and store personal information from your participants needs to be clearly communicated in an information sheet that they can retain and/or ask questions about before they take part in the research.
Merit, integrity and monitoring
Before any research with or about humans, their data, or their tissue is conducted, it’s important for you to critically think about the application of ethical values and principles and incorporate these into your research project. These commonly include research merit and integrity, justice, beneficence, and respect. However, you also need to consider the competence of yourself and your research team to undertake the proposed research methodology and methods. Consideration also needs to be afforded to how you’ll monitor the conduct of your research against what has been approved, and what might occur if an ethics review body receives a complaint about the way you’re conducting the research. Specifically, this topic will focus on values and guiding ethical principles, monitoring approved research, and what occurs when a complaint is made.
Beneficence, Research Merit, Competence, and Integrity
Before you conduct any sort of research, it’s important to think broadly about whether the research has benefit to individuals, groups, or society more generally. A good way to think about beneficence is: Do the benefits of the research outweigh the risks to the participants? When you’re planning your research, your concern should always be that the participants will find the research valuable (and hopefully interesting!), even if there is no immediate benefit to them. Any risks to those who are participating in your research should be minimised (via your research design) and the remaining risks managed, and your participants should be fully informed about both the benefits and risks in taking part in the research.
The conduct of all research will have some level of risk attached, even if this is minimal. For example, social risk may be present when you approach your family or friends to take part in the research or a time imposition risk if you are conducting lengthy interviews, and this will need to be addressed in your ethics application. Of course, the participants will need to be informed in the participant information of any risk that may affect them. Please do not ever try to minimise or downplay the risks of taking part in the research – always be clear and honest with the participants. When thinking about risks, don’t forget to also consider the risks to you as the researcher. For example, if you’re conducting an interview, you should think about the interview time and location and whether this could pose any potential risks. If it does, you also need to think about how you’ll manage that risk.
When thinking about whether research has merit, this means the research is justified, of appropriate quality, and that the project is being conducted by researchers who have experience and competence in that area. More specifically, justification of research means there is a benefit to individuals, groups, or greater society, or that the research will provide new knowledge. Appropriate quality means that the research aims, hypotheses or research questions, methodology, and methods are all appropriate to the research being conducted. Experience and competence means the research investigator or team have suitable training in a range of areas such as cultural and historical understandings for the specific topic, and possess good communication skills.
Another important principle that relates to both beneficence and research merit is research integrity. Research integrity shows that:
- the researcher has a genuine commitment to gaining a better understanding of specific knowledge
- the research will be disseminated to participants and society more broadly in ways that allow for greater contribution of knowledge on a topic, and for other researchers to critically examine the methods and results
ultimately to preserve and protect the trust that all participants place in research and researchers.
Respect is another important principle in ethical research and embodies a recognition that all human beings are valuable. Regarding research, this means that you, as a researcher, are committed to upholding a participant’s welfare above and beyond completing a specific research project or program. In other words, a participant is not to be treated as a means to justify an end, such as meeting the requirements for your research project, thesis, or survey completion. You also need to assess that you and the research team have appropriate knowledge of cultural groups, values, beliefs, and customs of the people you plan to engage with when conducting the research. It’s vitally important that you understand that culture and cultural difference are complex. While ethical review bodies appreciate that a researcher can’t be expected to ‘know it all’, you should be able to demonstrate that you’re aware of and mindful of any differences in values and culture your proposed participants may have to you, and are able to find appropriate ways to manage these differences.
Three ways to manage difference are:
- If you you’re targeting a specific group and feel that your cultural knowledge of this group could cause harm to the group, you may wish to reconsider the research or the research design.
- If, after careful consideration of the research or research design, you decide to go ahead with the research, you may want to invite someone with knowledge of the targeted participant group into your research team or seek them out as an advisor.
- If your targeted participation group may be vulnerable, also read through the ethical considerations specific to this participant group within the National Statement on Ethical Conduct in Human Research, 2007 (updated 2018).
Another element of being respectful to your participants is making sure they have all the information they need to make an informed choice about taking part in your research. For example, a participant will need to understand what your research is about, why you’re conducting the research, the process of the research (i.e., completing a survey or taking part in an interview) and the exact specifics of what they’ll need to do. This is one reason why it’s important that you write the participant information sheet clearly, concisely, and in plain language. It’s therefore essential that you limit or modify any scientific or discipline-specific words that your participants may have trouble understanding and include any acronyms or initialisms in full in the first instance.
Maintaining and honouring the rights and dignity of the participant is central. This is addressed, in part, through processes of confidentiality and privacy. When conducting research, the researcher will often ask participants detailed information about their life either for demographic purposes or as part of the research. For instance, demographic questions such as annual income or location. Participants need to know that you will respect the information given to you as part of the research process and trust that you will protect and manage that information appropriately. Some research could place the participant at significant risk if other people had access to that information, such as the disclosure of mental health disorders in the participant’s workplace. It’s important that you respect any personal disclosures from the participants and manage this information well. This could include strategies such as anonymising online questionnaires or using pseudonyms for participants who take part in interviews.
Sometimes there are additional things we might need to consider when working with certain communities. One example we can draw on here is the autistic and autism communities. How might we consider the research questions we pose to ensure they’re in alignment with the priorities of these communities? How might we adapt our methods to allow for more inclusive practice? Sometimes we may need to think a little outside the box to ensure meaningful and respectful engagement with our research participants, while still maintaining the highest possible ethical standards. The Australian Autism Research Council (AARC) has recently published commentary on some research priorities and The Cooperative Research Centre for Living with Autism (Autism CRC) has some good guides concerning inclusive research practices.
It’s easy to understand justice when we think about our legal system, but how does justice apply to human research ethics? This principle would typically refer to equity. In other words, we don’t want to exploit the participants who take part in our research. In a similar way, you also need to ensure that any research that involves vulnerable groups:
- has additional safeguards
- includes all people in your research that want to take part
- shares research conclusions in a way that’s appropriate to the individual or the organisation.
Let’s unpack this a little more.
We’ve already discussed the principle of respect. Justice really takes this principle a step further. Think about people who may be considered vulnerable under our ethical guidelines. For example, a person with a disability, children, or those people whose first language is not English. As researchers, you may need to take extra measures to ensure these people are protected. For instance, you may need to have an interpreter present if you interview someone from a linguistically diverse background, or if you’re observing a child you may need to obtain a parent’s permission to approach the child to participate in the research (as well as seeking the child’s assent to participate).
We’ve discussed recruitment already in this chapter, but as students and potential researchers, you need to ensure this process is fair. Most researchers will recruit and select participants either randomly or purposefully. If you’re recruiting a purposive sample, you may need to ensure that no one is left out, particularly those people who may already feel discriminated against or marginalised. In other words, you can’t leave particular participants out of the research simply because it’s more convenient for you, the researcher. For example, you may want to ask school children about their family life, but some children may be excluded because they may be perceived as being difficult due to physical or emotional concerns.
As part of the research process, it’s important that you take the time to disseminate your research to participants, but also to the community more broadly. The way you decide to disseminate your research should be considered in your research planning. Again, make sure you plan how to discuss your research with groups or individuals who may struggle with lengthy research summaries. It’s considered good practice to summarise your research once it’s completed and send your finding through to any interested parties. If you’re a research student, you would make sure this is a one or two page summary rather than sending your participants a copy of your thesis!
As a researcher, you need to periodically assess and verify that the conduct of your research conforms to your approved ethical proposal. This is referred to as ‘monitoring approved research’. Each institution will have their own specific process for monitoring approved research, so we’ll discuss monitoring as a general process. Overall, each research institution will have ultimate responsibility for monitoring its approved research. Typically, you’ll be asked to complete reports at regular periods (depending on the level of risk associated with the research) and at the conclusion of the project. You’ll normally also be required to notify your research institution and the approving ethical review body if anything occurs that was unexpected or occurred in excess of what you expected via an ‘adverse event report’. Many institutions will also provide you with conditions on the ethical approval of your research, so be sure to read your ethics approval carefully! For instance, if there are any complaints from participants about the way you conduct your research, your institution’s approving ethical review body will need to be advised.
Progress reports would normally be required at least on an annual basis by institutions. At this time, you’ll include your research conduct progress to date, your compliance with the approved project, and note any complaints from participants or any changes to your research protocol. It’s important to note that if you decide to make changes to the way you want to conduct the research process, then you must seek approval prior to implementing any of these changes. Normally, this will be undertaken via an amendment application submission and approval process. Examples of when you will need to seek approval via an amendment application include: if one of the research team leaves the project, or if an additional measure or scale is added into a questionnaire.
On very rare occasions, situations may arise where either you, the research institution or the ethical review body may find reasons to discontinue or suspend research conduct. If you need to discontinue your research, be sure to inform both your research institution and the ethical review body as soon as possible. Where the institution or ethical review body suspends or withdraws ethical approval, you need to ensure that all participants are treated fairly and with respect. Where ethical approval is withdrawn, you’re also required to notify your participants about the withdrawal of ethical approval. Additionally, you must cease data collection for the project immediately once advised ethical approval has been suspended or withdrawn.
Complaints About Research
Your research institution may receive complaints about you (as a researcher) or the way in which the research is being conducted. Complaints can be made by research participants, researchers, staff of institutions, and members of the public. In Australia, the majority of research institutions follow the National Health and Medical Research Council (NHMRC)’s Guide to Managing and Investigating Potential Breaches of the Australian Code for the Responsible Conduct of Research, 2018 (commonly referred to as ‘the Code’). This document outlines that breaches of the Code occur on a spectrum, as well as factors to consider when determining the seriousness of a breach. The consideration and management of complaints, together with the principles of procedural fairness and stakeholder responsibilities – both for institutions and researchers – are also provided.
It’s important that you only conduct your research once you’ve been granted full approval by an ethical review body. Any conditions of approval must be maintained or met, and any deviation from the original approval must be approved by the ethical review body prior to you implementing those changes. If you have any questions about what constitutes a deviation or variation, contact your ethics office to discuss the requirements at your institution. Ignorance is not a defence when it comes to complying with the Code requirements, so it’s best to check if you have any questions or doubts.
The APS Code of Ethics
The Australian Psychology Society is the professional body of choice for psychologists in Australia with over 27,000 members (Allied Health Professions Australia, 2021). The organisation has several roles including advocacy and promotion of psychological knowledge, and provides many benefits for its members. The purpose of the APS Code of Ethics is to protect both the welfare of clients and the morals of the profession (APS, n.d.). The Code has three general ethical principles: Respect for the rights and dignity of people and peoples, Propriety, and Integrity. Within each principle are several ethical standards along with explanatory statements. For example, the general principle A (Respect for the rights and dignity of people and people) has an explanatory note that outlines the principle and then provides an explanatory statement before unpacking each specific ethical standard. If you read through the APS Code of Ethics, you’ll see some similarity with the NHMRC Code. However, the APS Code specifically articulates ethical professional conduct and responsibilities required to be adhered to by psychologists in their practice.
While we would love to share with you examples from the APS Code, unfortunately it’s copyrighted. However, if you’re a member of the APS, you have access to the APS Code and we encourage you to download the information and have a look.
No doubt as you read through the chapter, you learnt things you may only have had a small amount of knowledge about. However, we hope you finish the chapter with a better understanding of ethics and some of the decision-making that psychological scientists need to appreciate before they embark on a research project. We also hope that when you’re reading research articles, you can critically reflect on the ethical issues the researchers themselves may have had to consider.
This chapter has been written by Tanya Machin, School of Psychology and Counselling, University of Southern Queensland, and Charlotte Brownlow, Graduate Research School, University of Southern Queensland.
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Please reference this chapter as:
Machin, T., & Brownlow, C. (2022). The essence of ethics for psychological researchers and psychologists. In T. Machin, T. Machin, C. Jeffries & N. Hoare (Eds.), The Australian handbook for careers in psychological science. University of Southern Queensland. https://usq.pressbooks.pub/psychologycareers/chapter/ethics/