Not creeping continued: may we have this data?

Older man with clipboard discusses information with younger man

Welcome back! Last time we talked about how to protect the privacy of evaluation participants. Today we’re going to continue our discussion of research ethics with informed consent and how to work with vulnerable populations.

Informed Consent

In order to be a researcher and not a “creeper,” you need to: 1) ask for participants’ permission, 2) be clear with them about what is going to happen, 3) explain the purpose of your study, and 4) give them the option to stop participating at any time. Let’s take a look at one of those examples from the Urban Dictionary definition of creeper again: “stares at you while you sleep.” What if you voluntarily signed up to go into a sleep lab and be monitored, including video taping, while you slept so researchers could learn more about helping people with insomnia? Someone is still staring at you while you sleep—but you gave them permission, you knew what was going to happen, you understood the purpose, and you can stop at any time.  

Informed consent often involves a written form, which explains all the relevant information about the study and gives participants a choice—without any negative consequences—to participate or not participate. This information should be provided in the preferred language for the participant and explained verbally if needed. The participant should have a chance to ask any questions they want before they sign the form. The informed consent process should cover the purpose of the study, what data will be collected and how they will be stored, used, and shared, the participant’s rights (which include being able to stop participating at any time), and who to contact for questions. 

In a library context, this means thinking about how you will be collecting data and building informed consent into the process. For example, if you were evaluating summer learning programming, you may decide to collect feedback by interviewing caregivers of participants at the beginning and the end of the summer to know more about their expectations and their experience. In that case, you should include the informed consent process when they register for summer learning, and make sure that it’s extremely clear that if they opt out of the interviews they can still participate fully in summer learning activities. 

Children are another vulnerable group that could be part of a library evaluation. For children under eighteen, their parent or guardian needs to give consent on their behalf. It is a best practice to still ask children and teens to give assent even when they are under eighteen. Assent means that you explain what will happen to the child and give them an opportunity to ask questions and agree or decline to participate. More information about this process with children can be found here

It’s best to make the informed consent process clear and low pressure, so someone can opt in or out easily. This can be as simple as explaining at the beginning of a survey that you’ll use this information to improve the program, and asking the participant if it is ok with them to analyze their survey responses.  

Vulnerable Populations

Vulnerable groups, from a research ethics perspective, are any groups that might be at greater risk due to participating in research and therefore need special consideration. Some of the groups often considered vulnerable are: pregnant women, groups who experience discrimination, children, prisoners, and anyone with limited capacity to consent. 

It’s a great practice to reflect on who you will be collecting data from and if they may feel vulnerable or if the data collection would be risky for them in any way. If so, you need to take extra steps to ensure that your data collection process is respectful, low pressure, and comfortable for these individuals. 

Immigrant and refugee communities are one example of a vulnerable population that might be included in a library program evaluations. To ensure that the data collection process is respectful, low pressure, and comfortable for this population, you might spend extra time going over the informed consent process with them to make sure that they understand whether their data can be identified, who will have access to their data, and how their data will be used. You should consider higher levels of privacy protection for this group as well.  When working with any vulnerable group, it is helpful to consult with representatives of the group to get their input on how to work respectfully with them. And, it is a best practice to compensate individuals who provide cultural advising for their contributions to an evaluation project. 

More next time

A clear and low pressure informed consent process and being thoughtful about working with vulnerable populations are two ways that researchers make sure their work is ethical and respectful to participants. Next time, we will wrap up our discussion of research ethics considerations by discussing access to benefit, incentives, and coercion.