I am not a bioethicist by training, yet I chose to write an article on the ethics of performing research in neonates and children (10.1542/neo.23-3-e151). So why did I, a physician scientist who conducts non-bioethics related research, volunteer for this task? The answer, I believe, lies in the fact that one of my goals in life is to make this world a better place for children. Although this journey can involve multiple paths, each of which are equally important in different ways, my non-clinical and non-fellowship related efforts have focused on clinical and translational research.
When I started this journey years ago, I had very little idea of how complex research in neonates could be or the ethical challenges I would encounter while conducting research that I thought was crucial for improving both short- and long-term neonatal and childhood health. Along the way, our Institutional Review Board staff became my good friends. The gratitude I feel daily towards the parents/families of all the newborns who graciously consented to enroll their precious newborns in our research projects cannot be adequately expressed with words. But just as importantly, I realized that I had this unique opportunity as well as a strong desire to share with others at least part of what I had learned over the years.
As I wrote this article, the notion that resonated the most strongly for me was the understanding that research involving neonates and children are not only ethically justified but essential to promote innovation, guide therapy, and ensure quality of care. Yes, neonates and children are a “vulnerable” and “scientifically complex” population; however, they are deserving of the same principle of “justice” as adults, which should allow them fair access to the potential benefits derived from clinical research. It is, however, our responsibility as researchers and champions for children to conduct research in an ethical manner. As elegantly stated by Walsh and colleagues (2019), “only research that meets ethical standards can be regarded as valid and applicable, and only research designs that are methodologically rigorous and appropriate can be regarded as ethical”.