Development of a Non-Invasive, Diagnostic Method for Otitis Media and its Influence on a Parent's Role in their Child's Medical Decision Making

How does ambiguity in diagnostic testing lead to tensions and dangers in treatment of childhood illnesses, injuries and diseases? Some childhood illnesses have large misdiagnosis rates due to the lack of definite diagnostic methods. A primary example is the 50% misdiagnosis between Acute Otitis Media (AOM) and Otitis Media with Effusion (OME) by pediatricians. Both illnesses are characterized by fluid build up in the middle ear, but AOM is an infection that needs to be treated with antibiotics while OME is a mechanical dysfunction of the eustachian tubes that requires surgery. The current noninvasive diagnostic (visual observation) is basically a guessing game at which case is which disease and the other diagnostics that give a more defined result (i.e., tympanometry, tympanocentesis, etc.) are invasive or even harmful to the child. This creates mistrust or a lack of understanding in parents, who are the primary decision-makers in their child’s medical care. This mistrust leads to parent requests for unecessary treatment or refusals of needed treatments for their child. Are we able to create more definitive testing and diagnostic methods in order to avoid this mistrust and lack of knowledge? And should we reevaluate the role that parents play in the medical decision-making for their children in order to avoid unnecessary requests and refusals? These are the questions driving my research from the past year.

In my technical report, I investigated a proof-of-concept for a new diagnostic method to differentiate between AOM and OME. Neutrophils are NADPH-containing, white blood cells present in the infection characteristic of AOM and not OME. NADPH is an autofluorescent molecule that reflects back light when a certain wavelength (365 nm) is shined on it. We constructed an optical instrument to determine if we could detect a statistically significant difference in light emissions in samples containing NADPH concentrations similar to AOM (10-8 M NADPH) and OME (10-9 M NADPH). As a continuation of a previous project, we worked primarily on increasing the sensitivity of the instrument by constructing new cases, changing/updating previous components, and experimenting with the gain/light intensity controls. We began this year with a sensitivity able to detect down to 10 μM, which is 10000x higher than the desired sensitivity We were unable to make the instrument sensitive enough to detect concentrations down to 10-9 M as our lowest detectable concentration was 1.17 μM of NADPH. The experiment was primarily confined due to light scattering within the system causing high levels of noise. We were also confined through optical phenomena like photobleaching (exhausting the amount of light that can be emitted from a sample) and photooxidation (oxygen in the air absorbing the emitted light leaving us unable to measure it).

In my sociotechnical synthesis report, I investigated the question: is the current role of parent’s as medical decisions-makers for their children ethical? Using four pillars of medical ethics developed by Thomas Beauchamp and James Childress, I analyzed two exemplary cases of a parent’s role in medical decision making for their child: Charlie Gard and Katie Wernecke. Charlie Gard is a case of an infant with a genetic disorder whose parents requested an experimental treatment while doctors felt it was time to take him off of life support. Katie Wernecke is a case of a teenage girl with lymphoma whose parents refused the doctor’s recommendations for radiation therapy. Both cases were analyzed under the individual pillars: autonomy, beneficence, non-maleficence, and justice. Ultimately, both cases, though varying greatly in the details and role of the parents, were found to be unethical under at least 2 of the 4 pillars. Charlie Gard’s case violated the pillars of non-maleficence and justice since extra emeprimentation and treatment was painful and harmful to Charlie and his age making his access to care limited without parental intervention. Katie Wernecke’s case violated nearly every pillar because, unless the courts intervened (which they did), Katie would have had no say over her treatment even though she was capable at making that decision, would be put in a harmful situation not in her best interests, and would have less access to care because of her age. At its current state, laws are ambiguous and up for individual interpretation due to lack of knowledge behind a child’s neurological development of decision making skills. More research needs to be done into this development in order to better inform legislators how to create more defined and standardized laws. There also needs to be more research into definitive diagnostics in order to improve the mistrust in diagnoses from physicians.

Overall, the projects were relatively successful, though are characterized by significant limitations. My technical project was able to reduce the sensitivity of the system, but we were unable to make the instrument sensitive enough to leave the NADPH proof-of-concept phase. We were also only testing solutions of NADPH, not neutrophils. We expect that the amount of light emitted will be drastically reduced in solutions containing neutrophils due to the cell membrane of the blood cell. Further research needs to be done with solutions of human-derived neutrophils before the instrument can leave its proof of concept phase. My STS report came up with the results I expected, which is that both cases were unethical. However, there is so much literature out there that focusing on only 2 case studies creates a shallow understanding. It would be a great step forward to investigate more case studies such as the anti-vaxx movement or overprescription of antibiotics in order to gain a deeper understanding on the ethics behind parent’s role in medical decision making. Ultimately, both the technical report and STS report are great starts at a generalized understanding that both need more testing and more research.