What’s In a Name?

by Suzanne M. Rivera, Ph.D.

In regulatory and research ethics circles, it is fairly common to hear people say they prefer the term “research participant” to “research subject” because they feel it’s more respectful.  They think the word “subject” is demeaning.  I respectfully disagree.  I think it’s honest.

The federal agencies that oversee human research use both terms as though they are interchangeable.  The National Institutes of Health (NIH), for example, has a policy called, “Required Education in the Protection of Research Participants” which compels training for “individuals involved in the design and/or conduct NIH funded human subjects research.”

Of course, some research subjects are willing and active participants, but many are not.  The truth is that many people are studied without their consent or even knowledge.  In compliance with federal regulations, and under the watchful eye of ethics committees called Institutional Review Boards (IRBs), millions of medical records, biological specimens, and other sources of data (like court records, purchasing patterns, and web searching cookies) are mined by researchers every day.  You and I don’t participate in those studies.  They are done to us.  To the extent these studies are done with integrity, I don’t object.  But let’s not pretend we are participants.

And, in the many cases where people do give consent and participate, such as clinical trials and psychology experiments, they still are subject to investigation.  Even community-based participatory research, where the objects of study collaborate with investigators to help design and conduct the experiments, it would be folly to suggest there is a balance of power.  To study and to be studied are two very different positions.

For this reason, I think the rhetorical urge toward use of the term “participant” is problematic.  It obscures the nature of the researcher-subject relationship.  Where power is unequal, it is disingenuous to pretend otherwise just because we find the truth uncomfortable.  

Permission to conduct human research is a privilege and it comes with enormous responsibilities.  Scientists must respect and honor the objects of their experiments.  The phrase “research subject” accurately describes the position of being studied, whether or not we have given consent. It would be a mistake to absolve researchers of the obligation to protect their subjects’ rights and welfare by implying, though use of the word “participants,” that we are all on equal footing.

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