Responding to the Reader
Volunteering for research
An expert in research ethics suggests questions you should ask before participating in a health research study.
Story by Janet Harvey/Illustration by Davey Thompson
About this feature
AHFMR frequently receives letters requesting information about Heritage research or about various medical conditions. "Responding to the reader" is a Research News feature intended to provide up-to-date information related to readers' questions, with the help of experts in the Alberta research community. AHFMR cannot provide medical advice, however; please consult your family physician about your specific health concerns.
Advances in healthcare depend on the development of new and improved treatments and procedures. These in turn depend on the evidence provided by health research. And a great deal of health research relies on volunteers to participate in studies and clinical trials.
However, in spite of the importance of research participants in the discovery process, which ultimately benefits everyone, the rights of these volunteers must not be violated along the way. In Canada, research involving human subjects must be approved by designated research ethics boards, which are guided by a national ethics policy. But whether a project has received ethics approval is only one factor to consider when you are thinking of participating in a research study. What other questions should you ask before consenting to participate?
In fact, how your consent is obtained is one of the very first things to consider, says Linda Barrett-Smith, the manager of Research Ethics Initiatives at AHFMR. She emphasizes that researchers must provide enough information—in plain language—about the project for you to make an informed decision whether or not to participate. That information should clearly outline the purpose of the study, what will be required of you as a participant, any risks your participation may expose you to, and the intended benefits of the project. In addition, neither the person asking for your consent nor the written information you receive should pressure you (either implicitly or explicitly) to participate in the project. “For example, if a health provider—such as your family doctor or a nurse in the hospital—asks you to participate in a research project, you should not feel that if you don’t participate, your care will be affected in any way,” she explains. Finally, you are free to withdraw from a research project at any point if you don’t feel comfortable. You have the right to revoke your consent without jeopardizing your treatment or care.
Your personal information is another issue to consider carefully. In Alberta, the Health Information Act requires researchers to protect the privacy and confidentiality of any health information disclosed during the project that could be used to identify you. Nevertheless, Barrett-Smith encourages you to ask some questions yourself. How will your personal information be used in the research? If you must complete forms or questionnaires, will your name be removed? What kind of questions will you be asked, and would the answers be traceable to you? Who will have access to your personal information? What security measures protect this information?
Even once all your questions have been answered and you have agreed to participate in the research project, your rights do not end there. She recommends asking whether the project has an independent phone number that participants can call if they have any questions or concerns—a number where participants do not have to speak to the researcher in charge of the study. “Don’t forget that once you’re in the study, you have the right to ask for information and, afterwards, to follow up to learn about the results of the research.
“Research discoveries are crucial to improving health treatment or care and I certainly encourage people to contribute to discovery by participating in research,” summarizes Barrett-Smith. “But it is also important to carefully consider before doing so.”