By Gillian Vogl
Whether you are a small business, academic or not-for-profit, it is easy to convince yourself when you are doing participant centred research that you are doing a good thing. You are placing the person at the centre of the research and ensuring that a product, service, or program is easier for a person like them to use. However, it is important to think carefully when carrying out/commissioning research if the benefits of the research outweigh the risks. I am not an ethics expert but would like to share some of my thoughts and learnings about carrying out ethical research.
Recruitment
When reaching out to people for recruitment, it is important that the recruitment process is carried out ethically. It is essential to:
- describe what the research is about in an accurate and accessible way
- clearly explain what will be required of the participant.
It should go without saying but potential participants should be treated with respect. Often due to inclusion criteria, some willing participants may not be able to be included in the research:
- Thank these participants and take the time to honestly enlighten them as to why they have not been chosen.
Once a participant has agreed to participate in the research, the next step is to send them a consent form
What to put on the consent form
- Who you are and how the research is being funded
- Why you are carrying out the research and how the data will be used.
- What you are asking the participant to do (e.g., take part in a focus group or a one-on-one interview)
- How much time will be involved for the participant
- What/if any benefits are there from research for the participant
- How the confidentiality of the research will be maintained (e.g., de-identified, stored on an onshore server, destroyed within one year) and if the session will be recorded.
- How long the research will be kept for
- That participation is voluntary, and the participant can withdraw at any stage without any negative consequences.
- Contact information for the participant in case they have a need to follow up post-participation.
- Information on how the participant can make a complaint and who they can complain to.
- Contacts for crisis services if the research could potentially cause distress
- If someone will be observing the research and a check box where the participant can agree or not to this (e.g., a client or mental health practitioner)
- If the participant will receive a cash payment/incentive for participating in the research and what that will be.
- A section for the participant to sign to say they have read and understood the research and their involvement in it.
Easy to read consent form/assent form
- For people who may find it difficult to understand a standard consent form, it is important to adapt the consent process to the person (e.g., a very visual consent form for person with a low literacy level)
Parental Consent
- If the participant is under 18 then you should usually get permission from both the young person and parent/carer for the participant to engage in the research
However
- If the young person is cognitively competent, the research is of minimal risk to the participant and parental consent may cause more harm than benefits to the young person (e.g., compromising the confidentiality of the participant) then it might not always be beneficial to get parental consent.
Has the participant read and understood the consent form?
It has been argued that systems of ethical review are sometimes more focused on protecting the institutions that carry out the research than as a protection for participants themselves. I know from decades of conducting research that a lot of people sign forms without reading them or without really understanding them. I would suggest as an additional check prior to carrying out the research, go through the main points in the consent form and ask if participants have any questions. Also, get their verbal permission to proceed.
‘Sensitive Research’
If the research topic is in a sensitive area, depending on the topic it is important to include one or all the following actions:
- Run potential questions by a mental health practitioner with expertise in that area
- Develop a distress protocol which can be referred to if required during the process
- Check for cultural appropriateness with representatives from the community that you are engaging with
- Have a mental health practitioner available during the research
- Ensure that you include contacts for a 24-hour crisis service on the consent form.
During the research process
- Be empathic (place yourself in the shoes of the person participating in your research)
- Cater to accessibility needs that participants might have
- Reward the participants for their expertise and time
- Be very accurate in how you record what the participants are saying.
Analysis
Dr Helen Kara’s advice on research with Indigenous people can be extended as important advice to follow when doing research with any vulnerable groups
She stresses the importance of researchers being aware that research has been used as a tool of oppression and that it is important to create a space for the voice of the ‘other’ and their knowledge.
- Take careful notes (if not recording) with lots of quotes
- Transcribe interviews
Ensure that two researchers independently analyse the findings and where you do not agree– get the opinion of a third researcher. Optimally, run your findings past the participants to ensure you have correctly understood them. We all view things through a particular lens – objectivity is about constant reflexivity (reflecting on how our own beliefs and judgments may influence our research findings). Never manipulate findings to please clients, funders or for the sake of presenting something unique at a conference.
Privacy
When writing up results, in qualitative research, it is important to use direct quotes to support your analysis. Ensure that these are included in a way that protects the anonymity of your participants.
Transcripts and notes should include no identifying information and be securely stored on an onshore server with participant names and contact details stored separately from the data.
And finally..
While where possible it is good practice to put your research project through a formal ethics process- that should just be the starting point.
References
https://www.interaction-design.org/literature/article/conducting-ethical-user-research
https://www.smashingmagazine.com/2020/12/ethical-considerations-ux-research/
https://uxplanet.org/user-research-ethics-resources-d645702464c8