Edward Gabriele: Trust in the Participant-Researcher Relationship

In our last episode we interviewed Aminu Yakubu who highlighted the issue of trust as a key concept in research ethics. This reminded us of the keynote speech at the 2004 PRIM&R IRB Conference, where Dr. Edward Gabriele spoke about the moment he realized that human research ethics and the IRB process are all about trust. Play the podcast in the player below or download it to your computer, smart phone, or tablet. Or, subscribe to the podcast on iTunes or Stitcher, listen on Google Play Music, or sign up to be notified when a new podcast is available.

About Dr. Edward Gabriele

Dr. Edward Gabriele is a research ethicist, theologian, and philosopher. When he made his keynote address at the 2004 IRB Conference, he was the executive research administrator for the Henry M. Jackson Foundation for the Advancement of Military Medicine, special assistant to the Navy Surgeon General for research ethics and integrity, as well as an assistant professor at Uniformed Services University of the Health Sciences.

Achieving Trust in the Participant-Researcher Relationship

The issues surrounding human subject protections and the participant-researcher relationship do not lie in technical non-compliance. The problem lies with the human ability to be trusted and to be counted as trustworthy. The words ‘trust’ and ’trustworthiness’ are not found in guidance provided by federal agencies. These words are much more associated with human relationships and friendship.

Our understanding of human subject protections is energized because it is grounded in the relationship that happens when a vulnerable human being trusts us in the act of inquiry.

A parallel can be drawn from the ancient world - volunteering for military service during the days of the Greco-Roman Empire was a sacred experience of trust and troth (fidelity, loyalty). The human subject relationship is similar in that it requires trust. But like any other relationship, trust has to be earned.

Human trust is best communicated in story.

Human research protections have had defining moments that constitute its story.

  • The Holocaust during WWII: Demonstrated what human beings were capable of and the level humans could sink to as a result of power, pride, and arrogance.
  • Tuskegee: Showed that the lack of trust in human research was not just a Nazi problem. It proved that violation of trust by the public health service could take place in America.
  • The Legacy of Jesse Gelsinger and Ellen Roche: Shows us that this problem is still happening now.

What these defining moments show us is that our commitment in trust is too often eroded.

The True Meaning of Passion

For Dr. Gabriele, the moment he realized that human research ethics and the IRB process are all about trust came from a trip to Egypt, where he encountered a young girl whose family was taking part in a vaccine trial. Dr. Gabriele uses the word passion to describe the driving force behind his work. He contends that protecting people has to go deeper than simple compliance, and "to be truly passionate means having to be open to suffer with."