A Passion for Human Rights
Each year, thousands of people participate as human subjects in U of I’s student and faculty research projects, engaging in simple surveys, focus groups, and even biomedical studies. But before researchers can even begin collecting information, they must pass a rigorous review process to prove the minds, bodies, and identities of their human subjects will be protected.
Jennifer Neelon in ORED’s Office of Research Assurances is a key figure in that process.
As Institutional Review Board (IRB) coordinator, Neelon serves as the primary resource for U of I faculty, staff and students on all forms of human subject research. She develops and implements policies and procedures, conducts training, and provides guidance on the institutional and legal requirements behind the ethical treatment of human subjects.
“Whether a proposal involves dealing with humans directly or secondary research like medical or educational records, I make sure researchers get the right amount of information they need while also protecting the subjects,” Neelon said.
As her title suggests, Neelon works directly with U of I’s Institutional Review Board, which protects the rights and safety of humans and ensures the confidentiality of their data when they are subjects in studies. IRB members include volunteer faculty and administrators from a variety of academic backgrounds. They help decide whether human subjects need more protections than originally proposed by the researchers.
“IRB reviewers do an ethical gut check,” Neelon said. “They look at details to ensure a human subject understands all aspects of the research. They make sure people are not coerced into participating, that all forms of risk are minimized, that the research actually holds some benefit, and help ensure that research data doesn’t get lost or stolen.”
She was drawn to this position as a way to exercise her interest and passion for human rights.
“Protecting people has been a big part of my life,” Neelon said, a U of I law school graduate. “This position enables me to stand for what is right and just.”
Even though she has a strong passion for human rights, Neelon and the IRB rarely connect with the human subjects they protect.
“If we’ve done our job up front, we won’t hear from human subjects, because they would be well aware of the research and the risks involved, and they would know whether they would want to participate,” Neelon said. “We mainly focus on the policies.”
Neelon encourages anyone at U of I wanting to engage in research to reach out and make sure the proper guidelines are in place.
“I welcome questions; we really are here to help at any point in the research process,” Neelon said. “The more we communicate, the faster we can resolve issues, especially if we catch problems in the early stages.”
Conducting human subject research? Contact Neelon at email@example.com with questions.
Article by Phillip Bogdan, Office of Research and Economic Development