Research involving people
You’ll need to follow specific protocols when working with human participants in order to meet your ethical obligations.
Last week, we reflected on a number of well-known research scandals that have led to greater accountability in the way people are treated today. In our modern research environment, the moment a human participant is involved in your research, you are now responsible for protecting their rights and must take due care for their welfare.
Will your research involve people?
If you’re not sure, take a look at the following list. If you are planning on incorporating any of them in your research, the answer is ‘yes’.
- Interviews, surveys, focus groups
- Observation either overt or covert
- Procedures testing physical, intellectual or emotional responses
- Data mining, using identified or identifiable personal data not on the public record
- Medical therapies, interventions and investigations
- Testing of drugs and medical devices
What rights must be protected?
In the absence of compelling justification, each of your participants has a right to:
- self-determination, ie autonomy (having control over their own life and deserving respect)
- privacy and dignity
- anonymity and confidentiality
- fair treatment
- protection from discomfort and harm (Babbie, 2007).
Protecting these rights goes beyond the cursory step of a signed consent form. It requires you to reflect deeply to anticipate the risks that might be associated with your research and then consider who might be impacted and how.
Ensuring consent at all times is an important step toward protecting these rights and having your research plan reviewed by a research ethics review body will also guide you.
As discussed in Week 1, in Australia, all research involving human participants must be cleared by a Human Research Ethics Committee (HREC) or delegated body on behalf of the HREC. If you are conducting independent research involving people and don’t have easy access to a review panel, you will likely need to arrange (and possibly pay) for an independent HREC review. It is important to check what the requirements are in your geographical region before you begin your research.
Example strategies for protecting participant rights in your research
Let’s start with the requirement to provide full disclosure to your participants. This means sharing all information regarding the nature of your study, including details on the likely risks and benefits of participating. Participants must also be aware of what your responsibilities are as the researcher.
If there is a degree of deception required for your research, this must be disclosed to and approved by your ethics committee. For example, participants in a placebo controlled medical trial would not initially be told if they are taking the drug or the placebo. Deceptive actions, such as withholding or providing false information are generally considered to be unethical practices.
Protecting privacy and confidentiality
If you’re using surveys, don’t have your participants write their names on them. If physically distributing surveys in a group context (eg a classroom) have individuals return the survey booklet irrespective of whether the survey has been completed.
Create back-ups of electronic files and ensure they are password protected. It is your responsibility to guard the privacy of personal information you collect. Take care to store and dispose of data correctly. Also refrain from distributing the data you have collected outside the research project.
Does the person know they are being studied and do they agree to being involved in it? An example of research that violates the principle of respect for human dignity is covert data collection, where data is collected without the participant’s knowledge.
Consider including a statement at the top of your survey (for example), informing the reader that their participation is voluntary and to simply return the survey if they choose not to participate. Also keep in mind that any written information you are providing participants, you must check is written in clear and simple language that is easy to understand.
Debriefing is a follow up measure to ensure your participants were not harmed (either physically or mentally) during the course of your research. This is particularly important for psychological experiments or research that used any type of deception in the design. The extent of the debriefing will depend on the nature of your research and the risks associated with it.
At the end of the study, a part of the debriefing process is also to relay the results to people who participated in your research. For example, you could email the participants and let them know where the results of your research can be viewed. At this point, a participant’s own results may be returned to them (if relevant and possible). Again, this would be agreed upon in the initial consent process.
To what extent are you involving people in your research? Reflect on the list of participant rights and then share what practical steps you will take to uphold them. Select the comments link and post at least two ideas that could potentially relate to your own research project.
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