by Michael McDonald, PhD
Michael McDonald is emeritus professor of applied ethics at the W. Maurice Young Centre for Applied Ethics in the School of Population and Public Health at the University of British Columbia and the webmaster for Quality Improvement for Research Ethics (QI4 research ethics).
It often seems to me that there are three solitudes in research participant protections:
- Institutional review board (IRB) members and staff;
- Researchers; and
- Research participants.
Despite having a shared commitment to the protection of research participants, communication between these groups can be limited, and in some cases, the groups may be largely unaware of one another.
In these mutual solitudes, it is easy to develop misconceptions of one another because there is no practice of direct exchange. This happens for understandable reasons: IRBs are often understaffed and overworked, researchers face intense competitive pressures, and participants often deal with difficult individual life circumstances.
However, the results of this are unfortunate. Mental images are filled with stereotypes—the evasive researcher, the sclerotic IRB, and the passive research subject. Misunderstandings occur, and important opportunities for more meaningful and less burdensome participant protections are missed. Most importantly, the very object of concern in human research protections—the research participant—is rarely given a real voice in the process.
It was with this in mind that a group of us from the Canadian Network for the Governance of Ethical Health Research Involving Humans came together in the summer of 2011 to brainstorm about developing tools for improving communications among these groups.
What we ultimately developed, field tested, and put on online were three free, easy-to-use surveys for canvassing the attitudes and beliefs of these stakeholders. The surveys provide rich quantitative and qualitative data that can be used to understand the perspectives of others, and are easily modifiable for local circumstances.
You can access these surveys on our website, Quality Improvement for Research Ethics (QI4 research ethics). These surveys are meant to enhance communications rather than to audit or enforce policies or regulations. We have found that the surveys can be a vital first step for improved protections that address the needs of participants as expressed by participants.
I invite you to take a look at our website, give the surveys a try, and let me know what you think.
Let’s work together to break down the solitudes in research protections for the benefit of all concerned—particularly research participants.