When does ‘yes’ really mean yes?
Consent is a hot topic. Let’s explore what you need to know to ensure the consent you receive from research participants is valid.
As you have just learnt, Autonomy is a core component of the ethical principle of Respect. It relates to each person’s right to make decisions for themselves. Let’s take it a step further and consider if our research participants can truly have autonomy without first knowing all the facts. In other words, how can they make sound decisions for themselves without knowing all the details and conditions they are agreeing to? Impossible, right? For this reason, Autonomy is directly connected to valid consent.
What is valid consent?
Valid consent has three essential elements. When you obtain agreement from people to participate in your research, you must ensure:
- their consent is informed
- their consent has not been forced or coerced
- they are legally able to give you their consent.
Let’s investigate each of these elements more closely.
1. The consent must be ‘informed’
Think for a moment how easy it is for someone to say ‘yes’ or sign a form, without really knowing what they are in for. Has it ever happened to you?
Each of your participants must know what they are agreeing to when they consent to be involved in your research. For example:
- Are they aware of the benefits and risks associated with participation?
- Are there financial incentives or other reimbursements available to them?
- Do they understand what the aims of the research are, the nature of the information you are seeking and what you will require from them during the process?
- Do they know what other choices and options are available to them, including the right to withdraw from the research at any time?
- Do they know how the results of your study will be disseminated and to what extent their privacy will be protected?
In some instances, participants may have literacy issues or not have English as their first language. You will need to accommodate each individual’s right to ensure their consent is informed. You must take whatever steps are necessary to be satisfied in your own mind they understand what they are agreeing to and be ready to defend this if requested. Keep good records during the consent process.
By the way, obtaining consent also does not absolve you from ensuring the participant’s welfare (Australian Council for International Development, 2017). Also keep in mind, some studies may need to have consent negotiated or revisited at different stages of the project. Especially if the study changes course. In other words, some projects can involve more than one consent strategy.
2. The consent cannot be coerced
The participant can’t be forced or pressured to participate in the research. Coercion occurs when the researcher is in a position of power over the potential participant, who will be somehow worse off if they don’t participate. Think for a moment how this could happen during research conducted in a school, workplace or other institution.
Strategies to mitigate perceived pressure include:
- concealing the identity of participants from the person with power over them
- timing the analysis of the data when the power imbalance is no longer an issue
- involving a third party in the recruitment and data analysis stages of the project.
While coercion usually relates to threats of harm and undue influence, it has been argued that excessive financial compensation for participating in research is also a form of coercion (Klitzman, 2012). Incentive payments become a problem if and when they result in participants ignoring the risks associated with the research.
3. The person must have the capacity to give their consent
Can your participant competently judge for themselves what’s in their best interest? Participants must have the intellectual capacity and emotional maturity to understand the implications of what they are agreeing to. This is called decisional capacity.
The Australian Council for International Development (2017) sums it up well:
The core idea is that a participant agreeing to take part in research should do so voluntarily, without coercion and with sufficient understanding of the research procedures, potential risks and potential benefits.
In the case of adults who are not competent to make decisions for themselves, the researcher must seek permission from a responsible family member or a legal guardian.
Research involving children
If your research involves children, you will need to carefully check what the consent requirements are in your geographical area. Using Europe as one example, you can see how the rules and guidelines for child participation in research vary greatly.
In some countries, the age of the child is also not the determining factor and validity of the consent is tied to each individual child’s capacity to understand.
It’s important to note that parents and guardians don’t have the right to consent to harmful research on the child’s behalf. It’s also highly unethical for you to ask.
There are also situations where seeking parental consent might be a source of risk to the young person. For example, talking to child when a parent might be the perpetrator of domestic violence, speaking to a young person living on the street and talking to their estranged parents or talking to a teenager about their attitudes to sex if their parent is a devout follower of a conservative religion.
In Week 2 of the course, we will further explore considerations for research specifically involving vulnerable populations.
Facebook’s controversial emotional contagion research manipulated the newsfeeds of almost 700,000 users. It then analysed the content of subsequent postings to research emotional contagion in an online environment. When ethical concerns relating to informed consent and the manipulative nature of this research was raised (Jouhki, et al 2016), Facebook’s defense was that everyone had accepted the terms of the user agreement, which did include consent for research.
Was it unethical for the newsfeeds to be manipulated and people’s privacy to be violated? Do you think the consent clause buried in the fine print of the user agreement constitutes valid consent? Select the comments link and share your opinion with the group.
Australian Council for International Development. (2017). Principles and Guidelines for Ethical Research and Evaluation in Development.
Jouhki, J., Lauk, E., Penttinen, M., Sormanen, N., & Uskali, T. (2016). Facebook’s Emotional Contagion Experiment as a Challenge to Research Ethics. Media and Communication, 4 (4).
Klitzman, R. (2013). How IRBs view and make decisions about coercion and undue influence. Journal of Medical Ethics, 39(4).
© Deakin University & Griffith University