Safe. Low-risk. Painless.
These are usually the words parents hear after their child is referred for a voiding cystourethrogram (VCUG) procedure, the “gold standard” test to diagnose vesicoureteral reflux (VUR) and kidney problems in pediatric care.
Given that hundreds of thousands of children undergo VCUGs every year, it’s painful to imagine how many parents have been deprived of their right to provide informed consent for their child’s medical care.
Legally effective informed consent isn’t just a recommended guideline; it’s an ethical and moral obligation for practicing physicians in the U.S. The doctrine holds doctors accountable for disclosing all reasonable information to parents of pediatric patients regarding a proposed medical treatment or procedure, an essential part of respecting caregivers’ right to make informed medical decisions for their children.
What Constitutes Informed Consent Violations for VCUG?
Part of being a parent means making the best medical decisions for your child's health, but you can't do that without being fully informed.
That's where the informed consent doctrine comes in. Providers are legally obligated to obtain legally effective informed consent from guardians prior to administering pediatric care to children.
To fulfill their obligations under the law, physicians must disclose all pertinent information related to the proposed care. For VCUG and any other medical procedure, this rule extends to any reasonable information that might affect the family's decisions for their child's medical treatment.
At a minimum, this means that pediatric providers should be disclosing:
The condition being treated.
The nature and character of the proposed medical care.
The expected results of the proposed treatment.
Recognized forms of alternative treatments that may also be available, including non-treatment.
Recognized serious risks, complications, and anticipated benefits.
5 Studies That Highlight Informed Consent Violations for VCUG
The VCUG is a routine diagnostic test performed on hundreds of thousands of children every year. Despite a wealth of objective evidence establishing its high rate of similarities to child sexual abuse, the fact that VCUG patients were used as a proxy for child sexual abuse victims in numerous studies isn't being disclosed to parents before or after their child's VCUG.
As former VCUG patients, we assure you that reaping the equivalent trauma of a violent rape is indeed "pertinent information." Thus, not disclosing this critical information constitutes an informed consent violation. We can do better, and we must do better, to fully inform and educate families before VCUG to help children avoid lasting harm.
Why do pediatric practices insist on promoting VCUG as safe, painless, and minimally invasive? Why do hospitals limit VCUG risks to "ionizing radiation" when patients have been used as stand-ins in numerous CSA studies? Your guess is as good as ours, but we're here to unpack the facts.
In this blog, we'll review 5 critically appraised studies that reveal informed consent violations for the VCUG procedure in pediatric urology.
#1. A 2014 study found that VCUG trauma is comparable to that of a violent rape, “especially in girls.”
A 2014 study showed that the psychological trauma of undergoing a VCUG in early childhood is comparable to that of a violent rape.
Let that sink in for a second.
To give you a better idea of the surprising discrepancies in VCUG marketing content, here's an excerpt from the Inova Fairfax Hospital for Children: “Some children say this part of the test hurts a little, but many say it is simply uncomfortable. Once the catheter is in place, your child probably won’t feel it is there.”
Experiencing the trauma of "a violent rape" is certainly more than "simply uncomfortable." As former VCUG patients, we assure you there's nothing "simple" about it.
“Some children say this part of the test hurts a little, but many say it is simply uncomfortable. Once the catheter is in place, your child probably won’t feel it is there.”
#2. A 2004 study used VCUG patients as proxies for child sexual abuse victims.
A 2004 study revealed additional information about the VCUG procedure that doctors aren't disclosing: that VCUG patients were used as a proxy in multiple child sexual abuse studies. According to researchers, the VCUG procedure “was used as the target event in this study because it is similar in many ways to child sexual abuse, the real-world behavior that we hope to generalize these results to.”
A correct and credible claim, seeing that this next study also leveraged VCUG survivors as stand-ins for child sexual abuse victims.
#3. Another 1994 study also used VCUG patients as proxies for child sexual abuse victims.
"Children's memory for features of a voiding cystourethrogram (VCUG) experience were examined because this invasive procedure is similar in many respects to incidents of sexual abuse,” reads this 1994 study.
It’s worth taking a moment to acknowledge that this information was available to physicians as early as 1990. The medical companies marketing this test have had over three decades to get in the practice of informing parents of this significant, well-evidenced risk of psychological harm, yet hospitals failed to make the adjustment required of them according to the ethics in the informed consent doctrine.
Not only that, but they also neglected to make a single change to the VCUG test during this 30+ year period. This procedure has been performed the same way since its initiation.
Trauma is in the eye of the beholder, meaning that the person who experiences it—or rather, their brain and body—determines whether or not the event is traumatic. The bottom line, according to decades of literature, is that many children experience the VCUG test as rape.
This is not an opinion, nor is it an isolated experience; it is a well-evidenced, well-established fact in the literature. Some common characteristics of VCUG and CSA include:
Sexual contact
Contact forced against the child’s will
Removal of clothing
The child is anxious
The child is encouraged to relax and not resist
The incident is not voluntary
The incident is conducted by trusted authority figures, which often extends to the caregiver who permitted it to occur
We never aim to discredit or invalidate those who have experienced child sexual abuse. In the case of VCUG patients, child sexual abuse (CSA) is an objectively traumatic experience that is subjectively perceived by patients as sexually traumatic.
#4. The infamous Goodman study laid the groundwork for dissociative amnesia after VCUG, describing it as “painful and stressful genital contact.”
Perhaps the most infamous research on the shocking similarities between VCUG and child sexual abuse is the 1997 Goodman study.
“We examined children’s long-term memory for a documented medical procedure, voiding cystourethrogram fluoroscopy (VCUG), that involves painful and stressful genital contact,” the study explains, immediately rejecting countless online resources—in 2023, no less—that describe VCUGs as painless and minimally invasive.
#5. A 1998 article titled “Test or Trauma?” underlines how distressing VCUGs actually are for kids.
“Many diagnostic procedures, while necessary and appropriate, may be experienced by a child as a trauma. Health care professionals often perceive invasive procedures such as surgery and needle biopsies as more painful and threatening to the child than ‘test’ such as voiding cystourethrograms (VCUGs),” this 1998 study shows. “However, clinical experience indicates that the VCUG is often perceived by children as more highly distressing than other procedures. Success and a sense of competence (or shame and doubt) in mastering challenging life experiences, such as medical procedures, contribute to a child's evolving self-concept (Harter, 1983). These memories and successful behaviors can be applied to future similar situations.”
By “future situations,” the literature refers to the tremendous hardships many VCUG survivors go on to experience—including adverse health effects, self-harm, PTSD, and susceptibility to abuse due to this traumatic procedure that demands complete compliance and forced sexual contact by medical staff in positions of total power and authority—in crucial early development stages.
Join the Unsilenced Movement
For decades, doctors have not disclosed the risks and long-term harm of VCUG to parents. The Unsilenced Movement is here to take back the narrative and hold medical professionals accountable for fulfilling their obligations under the informed consent doctrine. Join the Movement to advocate for overdue reform in pediatric urology.