Study Participant Information

So much of what we know about society and individuals and their bodies comes from studies that trained researchers conduct. Most research at WWU is "social-behavioral-educational" (SBER) research. By collecting information about people's behaviors, beliefs, habits, ways of learning, etc., researchers can help understand why people make certain choices, create better policies, develop more effective educational materials, and promote better physical and mental well-being.

Some WWU researchers conduct "biobehavioral" research that collects biometric measurements. For example, researchers might clip or strap a device onto a person that measures heart rate or muscle contraction to see how the body works in certain circumstances. They might analyze biometric data to help improve athletic performance or develop ways to assist aging bodies regain strength. Or they might use an eye-tracking device to learn more about people's perception. (WWU researchers rarely engage in biomedical research such as one would expect from a training hospital or a university with a medical school.)

Conducting research with human participants allows our WWU undergraduate and graduate students to learn and grow as emerging researchers, and your participation helps with their training. Some might discover important results in their early studies, and some might find that these studies now will lead to careers where they also discover important results.

By choosing to participate in a research study, you help contribute to knowledge that could in turn help many other people, and you also help our WWU research community pursue their interests.

The HRPP and IRB have the job of protecting you as a research participant. The HRPP is an office within WWU's Research Integrity and Compliance that makes sure that WWU researchers not only follow federal regulations and WWU policies, but that they conduct research with the best ethical practices. The HRPP reviews all applications from researchers who want to collect data directly from or about individual people and then gives permission to the researchers once it's clear that their plans meet all necessary standards.

In cases where more risks to participants might exist in participating, additional members of the Institutional Review Board (IRB) will also consider researcher applications and offer suggestions to lower risks. If a research study has potentially high risks or involves collecting data from "vulnerable populations" (for example, young children), the entire IRB meets as a group to discuss the study and consider ways to minimize any risks to participants. The IRB is a board made up of WWU faculty, staff, a student representative, and community representatives.

In any recruitment materials, the researcher(s) should provide an email or phone number through which you can contact them for more information about a study. If this information is not included, please contact the HRPP, and we can connect you.

Informed consent is a process that starts before you participate in a study and continues even after the research activities end. The researcher should provide you with an "informed consent" form, information sheet, or online information that tells you everything you need to know about the study, so that you can decide whether to participate. You can also always ask more questions if you have them. Typically, consent language includes the following information:

• Who is the researcher conducting the study
• Why the researcher is conducting the study
• What information the researcher will collect about you and from you
• How the researcher will use and store your information (and for how long)
• What activities will be involved and how long they'll take
• Whether you will receive any gifts or incentives for participating
• Whether participating in the study might benefit you directly and/or benefit another group or society
• Whether there are any risks involved in participating
• Whether anyone else might see your information or the researcher might use it for another purpose
• How to contact the researcher or the HRPP if you have questions or concerns

Remember: Giving your consent is not a "one and done" action. You can always stop or withdraw from a study at any time. And if the researcher is collecting information that will retain your name or be connected to you, you can ask the researcher later not to use that data.

With any research study, you always have the right to stop or quit at any time. The choice whether to participate or whether to keep participating is always yours.

If you participate in a study and decide later that you have changed your mind and don't want the researcher to use your information, you can contact the researcher and, in many cases, ask your data to be withdrawn and deleted. Some exceptions exist:

• If the researcher never collected your name or enough information that could trace responses back to you (such as age, gender, race, etc.), then the researcher might not know which data is yours and wouldn't be able to delete it.
• If you initially gave the researcher permission to use your name or other identifying information in research presentations or publications, and those have already taken place, the researcher no longer can remove or retract your data once it has become public. (But you may ask that the researcher not use your data for any future projects.)

The informed consent material should clearly explain to you what the researcher plans to do with study information, how the researcher will store your data, and what the researcher might do with the data in the future. If you have questions about any of this, you should contact the researcher to ask.

No researcher should use data that has your name or other information about you connected to it for other projects unless the researcher explicitly indicated that plan (often called "Future Data Use") in the consent form. If you discover that the researcher has done so without your knowledge or permission, you should express your concern to the researcher or contact the HRPP directly.

Every study is different. Some might involve a short online survey, while another might ask you to participate in a 2-hour focus group. Some studies are "one and done" with a single research activity, but others are "longitudinal," meaning that they take place over time: you might take a survey, and then the researcher might interview you at a later point.

The recruitment materials (where you saw information about the study) and the consent form should give you details about your time commitment, or at least an approximate timeframe.

Some studies offer money for participation, and the consent form will give you that information. At WWU, most research projects either do not provide monetary incentives or they might offer a gift card of a small dollar amount or another token of gratitude (for example, a gift card to a coffee shop or online shopping). 

The consent materials should clearly tell you about any possible risks involved with participating, so that you can make an informed decision. Sometimes, though, a researcher honestly cannot foresee every risk or problem that might arise. If something occurs that you weren't expecting, contact the researcher to express your concern or contact the HRPP directly.

When reporting a concern to the HRPP, please include the following information, if you have it (check the study consent information):

• Principal Investigator/Researcher Name
• HRPP Study #
• Study Title

Western Washington University (WWU) has partnered with the Collaborative Institutional Training Initiative (CITI) to provide a free online training courses in human research protections. If you like, you can complete the short free CITI module Are You Thinking About Being in a Research Study? (ID: 14562). Follow these detailed registration directions to sign up for CITI and enroll in the course at no cost to you.