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. Continue reading