Information for Research Participants

The Alverno College Institutional Review Board (IRB) provides independent review of research proposals for the purpose of protecting the rights of human research participants.

What are my rights as a research participant?

Most importantly, you have the right to decide whether or not to participate and to have access to the information that you need in order to make your decision based on accurate and complete knowledge of what your participation will entail. This right is provided through a process of informed consent. Informed consent implies that you as research participant make the decision for yourself about the amount of risk that you are willing to take in participation in research.

You have the right to know the study’s purpose and what you are being asked to do as a participant in the study. This information is typically provided on an informed consent form.

You have the right to know how your privacy is protected in the study. In particular you must be told whether your data are anonymous, confidential, or neither.  “Anonymous” means that the researchers do not know the identity of the participant who provided a particular piece of data. They have no way of connecting your responses in the study to yourself. “Confidential” means that the researchers do know who provided each piece of data, but they have promised to keep the participants’ identities secret.

You have the right to decline participation and to do so free from any coercion. A course instructor cannot make successful course completion contingent on participation in research, for example.

You have the right to withdraw your participation at any point even after having agreed to participate. Of course sometimes practical considerations put limits on this right. Researchers cannot undo participation that you have already engaged in, and sometimes cannot remove your data from the data they have collected (for example if the data were collected anonymously). But to the extent that they can remove your data from the study the researchers must do so if you request it. And they cannot insist that you continue providing data after you have told them that you want to withdraw from the study.

You have the right to ask questions and to base your decisions on the responses. In some cases, research does require withholding information from participants simply because people behave differently based on what they know. In those cases an independent review of the study’s risks will have been conducted and the researcher will be required to justify the withholding of information and to offer to provide information as soon as practically possible.

You have the right to contact someone independent of the persons conducting the study to express any concerns you have about your treatment as a participant in the study. Generally this means that the researcher must provide you with contact information for the Chair of the Institutional Review Board. At Alverno College, the IRB Chair can be reached at irbchair@alverno.edu.

Conclusion

The Institutional Review Board works with researchers to make sure that participants’ rights are protected and that their consent to participate in research is meaningful and freely given. As a potential participant, you should be aware of those rights and how to exercise them as you make your judgment about participation.