Pediatric Bioethics: Misinformation, Misdiagnoses and Other Online Missteps

Recent data suggests that between 40% and 80% of parents search online about their child’s symptoms before going to the doctor. They may even come to their appointments with a preformed idea of what their child has and compare what their pediatrician or subspecialist says to what they have read online. And parents are not the only ones who do this. Many health care workers, students and even doctors may do the same. But what are the attendant risks? As we have an obligation to educate patients and their parents, make accurate diagnoses, and provide evidence-based care to avoid harm and serve the child’s best interests, we should know more ourselves. Let’s look at the risks of online health information.

In our very connected world, one cannot fault parents for searching online for medical information. The everyday use of the internet, various social media platforms and increasingly complex large language models or generative artificial intelligence make the prevalent use of handheld devices a natural occurrence. But not all the information that patients or parents seek online is correct, in line with current medical knowledge, or evidence based. In fact, some may be based on old data, unproven theories, or even be harmful. Consequences might include challenges to the patient/parent-physician relationship, parents and youth seeking non-evidence-based “miracle cures,” increased use of costly treatments and supplements, and even unnecessary testing. What can be done about these behaviors? Are they the responsibility of pediatricians to find, and correct? It can certainly be said that out of an abundance of care, concern and even professional obligation, pediatricians should know about their patients’ and parents’ use of online inquiries to better address health-related education, concerns about symptoms, worries about outcomes, and what the best treatment options are. While being astute diagnosticians and capable of managing numerous health care concerns, pediatricians in the 21st century must also be, in a word, “interpreters.”

What I mean here is that we have the responsibility to interpret signs and symptoms, yes. But we similarly should be disposed toward helping patients and parents interpret what they find online; why their case may not be synonymous with the cases reported online; why treatment options are different; and what to look for as signs of worsening illness, not responding to prescribed care, or encountering a medication’s side effects.

Physicians and medical professionals should look at what their patients and parents are viewing online. This can help in understanding what sources are commonly used, considered trustworthy, and relied upon for diagnostic, prescriptive or prognostic details. While poor health literacy and numeracy are known to be very prevalent in American society, recent events have helped reveal an overall poor science literacy, too.

As we see more youth and their parents relying on online health-related websites, blogs, YouTube, search engines, and social media like Instagram and TikTok, pediatricians can turn toward actively discussing such practices at all encounters. Of course, this should be done with deft situational awareness and in a non-threatening way. Being open to questions, providing clarifications, and dealing with challenges when there are differences in what is perceived to be true, all display a willingness to engage with patients and parents to work toward shared decision-making. Most patients and parents genuinely want to hear evidence-based, or scientific, information from their pediatrician and to receive a recommendation for next steps in their medical decision-making. One author suggests the following as an example of phrasing that can be used to open such a discussion:

I realize you have likely spent some time searching for information online. There are many great resources available that offer evidence-based information. Unfortunately, there are also many non-evidenced sources that provide incorrect, and possibly harmful, information. Please feel free to ask me any questions about the information you have read, particularly if it differs significantly from the information I provide to you. If you’d like, I am happy to provide you with a list of trusted resources that provide vetted information. I do recommend caution if you encounter personal stories or information surrounding treatment that sounds too good to be true, as that is often the case.¹

With guided discussions, parents and pediatricians can reach an understanding about health care advice, recommended vaccination schedules, appropriate treatments versus those that might be ineffective or even harmful, and the value of mutual respect.

References and Additional Reading:

1. Stukus DR. How Dr. Google is impacting parental medical decision making. Immunol Allergy Clin N Am. 2019;39:583-591. doi:1016/j.iac.2019.07.011
2. Schoenleber SJ, Wilson DR, Mohler SA, Siegel ER, Rabenhorst BM. Dr Google: which parents are performing the most online research prior to the first clinic visit? J Pediatr Orthoped Soc Am. 2025;13:100279. doi:1016/j.jposna.2025.100279
3. Frey E, Bonfiglioli C, Brunner M, Frawley J. Parents’ use of social media as a health information source for their children: a scoping review. Acad Pediatr. 2022;22(4):526-539. doi:10.1016/j.acap.2021.12.006