Guest Author: Not Enough IRBs by anonymouscharity

Apparently there are not yet sufficient numbers of Institutional Review Boards (IRBs) in this country. While doctoral learners and other researchers are busy completing hours and hours of ethics training from organizations like the CITI Program, submitting and resubmitting (often in numerous iterations) to their institutions’ (IRBs) just to ask a few survey questions, grossly unethical government-funded medical research goes forward, targeting some of our most vulnerable populations.

It’s recently come to light that a research study published in 2010 about oxygen treatments for prematurely-born infants used unbelievably unethical approaches to target poor minority populations in places like Alabama, gain parental consent for participation with nothing that even closely resembles informed consent, administer a purely randomized oxygen treatment to preemies that disregarded the patients’ medical indications, and even misrepresented patient information to medical personnel so they would not discontinue inappropriate treatments in response to the babies’ reactions.

“It’s not unethical when the government does it,” wrote Glenn Reynolds sarcastically. Sharyl Attkisson shared a number of anecdotes from parents whose children were likely negatively affected by their participation in this study. Her piece provides a strong analysis of this egregious situation. The parents report the ways that the study’s “SUPPORT” name misrepresented the intent, how they were never informed of the true nature of the study, and how they were encouraged to participate as a means of gaining better treatment for their babies, even though the study had very little connection to providing improved care to those particular study participants.

While I was going around and around with my institution’s IRB over extensive confidentiality requirements for a 5-question email survey to fully informed, consenting, volunteer adults about school practices, this study was going forward doing real harm to the most vulnerable in our society, on the taxpayer dime (to the tune of $20.8 million). Apparently the Federal government needs a better IRB.