Protecting our subjects

Conducting ethical research and protecting human subjects in our lab

Prerequisites

Training & clearances

  • Make sure you’ve completed Penn’s IRB required CITI Training

  • Make sure that your background check is complete

Background videos

  • Watch this informational video to learn important guidelines for conducting ethical research with human subjects.

  • watch a video made for children who participated in a clinical research study. I selected this video because it is a great example of how researchers should talk to children about participating in research. In fact, this video was created based on input from children, who described how they would like to be informed about research.

Adult rights in our lab

In our lab, we use a consent form to inform participants about our research. First we tell them a little about the the study.

Voluntary participation

Then, we let them know that participation is voluntary. If a participant wants to stop participating, we should stop right away, even if we are right in the middle of the experiment.

Freedom from coercion

We make sure they don't feel pressured or coerced into participating in a study. This means:

  • We can't offer too large an incentive (e.g., $1000 for a 5-minute study)

  • We can't ask friends or family members to participate

  • We can't goad people into participating (e.g., "Come on, it'll just take 5 minutes"; "It'll be super fun, I promise!")

  • We can't ask people we have authority over (e.g. students)

  • We can't offer an incentive that is contingent on completing the study

Understand risks & benefits

Our studies are "no more than minimal risk", meaning the risks associated with participating are very small. Still, we must try to minimize these risks and to explain them to our participants.

Confidentiality

Participants have the right to have any data collected about them remain confidential. We inform them of how we'll use their data and how we plan to keep it safe.

Fully informed

Participants have the right to be fully informed about the research they participate in. In our research, we can't inform participants of exactly our research questions before they participate, because doing so might bias them or influence how they perform the study. Instead, we inform the participants of the exact nature of the research after the study (debriefing).

Child rights in our lab

Children have exactly the same rights as adult subjects, but special considerations must be made to obtain informed consent, ensure participation is voluntary, and that the child's right to freedom from coercion is not violated.

Parent or guardian rights

Before we invite a child to participate in a study, we need permission from their parent. Our parent informed consent provides parents with the same participant rights as adult subjects, including a clear description of what their child's rights are as a participant.

Next we need to make sure that the child knows they are being asked to be in our research study, what will happen in the study, and that participating is voluntary. Our assent script can help you explain the research to kids.

Kid's also have the right to voluntary participation. They don't have to be in the study, and they don't have to keep being in the study if they want to stop.

Freedom from coercion

Just like our adult participants, kids shouldn't feel at all pressured or coerced to be in a study. Importantly, things that are coercive to a child may be different than things that are coercive to an adult. Things that might make a child might feel coerced include:

  • Being told they have to participate by a parent or carer, teacher, or researcher

  • Being told a parent or career, teacher, or researcher will be hurt or upset if the child doesn't participate.

  • Being told that they are bad or naughty if they do not participate or continue participating.

  • Being offered a reward that is contingent on completing the study

  • Being offered an additional incentive to continue after they've expressed the desire to withdraw (e.g., "If you finish this part, I'll give you an extra prize at the end")

  • Being told things that imply the researcher will think less of the child if they do not participate or continue participating (e.g., "all the other children were able to make it to the end")

Fully informed

Kids also have the right to be fully informed about the research study they have participated in. To ensure this, we (1) give them the same debriefing as adults (which means we ensure the debriefing is simple enough for a child to understand), and (2) make sure the child and their parents know who to ask if they have questions about the research study (you or me).