Information for Research Participants

Saint Louis University researchers work to bring forth discoveries that make meaningful contributions to our world. Our research ranges from looking at new ways of teaching and communicating to concerns of public health and advancements in medicine. To be successful in their efforts, we need volunteers.

SLU is committed to protecting the people who volunteer in our research. SLU has dedicated committees that review and approve research that involves human volunteers that are known as institutional review boards (IRBs).

The IRBs review research to make sure that the risks are as minimal as possible and are reasonable compared to the potential benefits of the research. IRBs make sure that participants are fully informed about research and are given the choice to take part or not (or stop participation at any time), and that appropriate protections are in place for participant safety.

This page goes into more detail about understanding research and the rights of research participants. We hope this information helps you make informed choices about whether to take part in research at SLU and assists you with knowing who to contact with questions or concerns about being a SLU research participant.

Common Research Terms

As a research participant, it is important to be aware of what you are getting involved with. Here are some definitions of common research terms that may help you understand the world of research.

Case study

A process of research in which detailed consideration is given to the development of a particular person, group, or situation over a period of time.

Cognitive impairment

When a person has trouble remembering, learning new things, concentrating, or making decisions that affect their everyday life.

Human subject research

A systematic investigation that involves living human beings or their private, identifiable data or biological samples.

Informed consent

If you decide to participate in research, the facts of the research will be given to you in a consent form. The purpose of this form is to make you aware of what exactly will be happening in the research, and aid your decision whether or not to participate in the research. Informed consent will outline your rights as a research participant.

Along with this form, you should be told the risks of the study. During this discussion you can ask questions and make sure you understand what the research involves. After you have read the informed consent and have had a discussion, you will make the decision to participate in the research or not

Institutional Review Board (IRB)

A group of people made up of scientists, non-scientists and community members. The purpose of this group is to look at every protocol or research study before research is performed and make sure the risk is justified and minimized.

Intervention

Includes both physical procedures by which data are gathered and manipulations of the subject or subject's environment that are performed for research purposes.

Investigator

Anyone involved in conducting a proposed research project.

Minimal risk

Probability and magnitude of harm or discomfort anticipated in the proposed research are not greater, in and of themselves, than those ordinarily encountered in daily life or during the performance of routine physical or psychological examinations or tests.

Principal investigator (PI)

The person who conducts the research. Along with this lead researcher, there are many other people who may be a part of the research team.

Protocol

The official procedure that is to be followed by the researcher. It is approved by the Institutional Review Board and is put in place to protect the participant.

Research study

An organized and careful way of collecting data and information in order to learn something new.

Research subject

A person who voluntarily decides to participate in a research study. This person is helping the researcher learn something new, and can quit participating at any time.

Your Rights and Questions to Ask

You have the right to make an informed decision without any pressure. There will not be any consequences if you refuse to participate.

You have the right to receive information about the study. This will come in a written format called informed consent. This form will be coupled with discussion of the research. If you do not understand something, the research team must explain it to you in a way in which you understand. You have the right to ask questions at any time and to have your questions answered. You have a right to receive and keep a copy of the consent form if you choose to sign and date it.

You have the right to stop participating at any point during the study. If at any point in time, you choose not to participate, this will not affect your rights to which you are entitled.

If at any time you have questions or concerns, you can contact either the researcher or the IRB. Researcher contact information is listed on the informed consent. IRB contact information can be found here.

Questions to Ask:

  • What is research?
  • Who reviews and approves research at SLU?
  • Who watches over research while it is being done?
  • Where can I find more general information about research?
  • Where can I find research to participate in?
  • What will it cost me?
  • What if I change my mind after the start of the study?
  • How do I withdraw from a study?
  • What if something bad happens to me while I am a research participant? 
  • Will I be told the results of the study?
  • What if I have questions, comments, or concerns after the study is completed?

Remember: You have the right to understand the research you are considering participating in. If you do not understand the answer, ask the question again.

Community Involvement in SLU Research

SLU is dedicated to community service and community involvement. As such, the University encourages community involvement in the research that we do. Multiple units of the University conduct community involved research, and the administration of the University provides support so that the community can be included, involved and served to the fullest extent.

These initiatives include programs like the President's Research Fund and the community-based participatory research program in which University researchers collaborate with community members to create, implement and assess needs of the community.

One such research project involved an undergraduate student and a faculty member titled "National Health and Education Study of Black Men." The collaboration began through the African American Male Scholars Initiative that provides programs, services and experiences that connect students to University and community resources such as mentoring that facilitate success. This program conducted focus groups with African American men in St. Louis and Nashville, Tenn., exploring views of racial and gender identity, and how those attitudes and beliefs influence both health-related behavior and experiences with the health care system.

These focus groups included discussion of jobs, education and economic prospects as intertwined with health. Because of this research, the student shifted his research focus from sports medicine to population and societal level research. In supporting research such as this, the University solidifies its commitment to involvement of community members in significant research questions and exploration of solutions that will benefit them.

Another initiative in which Saint Louis University participated is the Community University Health Research Partnership, a collaborative research project with Washington University in St. Louis that required community participation and assessment. Community partners were responsible for assisting with the design, implementation, and evaluation of each project funded by CUHRP. University administration provided funds and resources in the form of proposal review and award committees and provided research space for the projects.

Areas of SLU that are involved in community-centered research include the following:

  • School of Medicine/Family and Community Medicine
  • College for Public Health and Social Justice
  • Center for Service and Community Engagement
  • Center for Sustainability
  • The Albert Gnaegi Center for Health Care Ethics

Researchers Looking to Involve Community

Researchers at Saint Louis University are encouraged to contact the Office of Research Development and Services for assistance in developing, implementing and administering research projects and can offer assistance in bringing collaborators and community members together and ensuring that community members are fully engaged and fairly involved through contract negotiation and subcontracting efforts.

The SLU IRB's Guidance for Studies Involving Non-SLU Researchers or Non-SLU Sites describes the support and required actions in place for researchers who engage community partners in the conduct of human subjects research. The IRB has created a human subjects protections training course for External collaborators that is abbreviated in nature, but still contains the essential information on protecting participants' rights and welfare. Community partners can take that training in place of the extended version for SLU researchers in order to join in the conduct, evaluation and dissemination of research.