In this interactive and case-based session, the Children’s Bioethics Centre team will introduce the ethical idea of deciding with children, rather than ‘for’ them. We will briefly describe the ethical foundations of this idea, discuss what it means in practice, and why it matters.
There has in recent years been a rapid increase in the number and complexity of clinical trials and novel therapies for neurogenetic conditions. Many of these conditions are individually rare, but their impact upon affected children and their families may be very severe. While the increasing awareness and availability of new treatments brings great hope and excitement for all involved in care of these children, it also presents significant challenges for clinicians and for patients and their families.
The COVID-19 pandemic is forcing us to re-organize and re-conceptualize many aspects of our lives. In this Grand Round, I will start with some general thoughts about these changes. Then, I will focus specifically on the challenges that the pandemic creates for the way that we oversee and regulate clinical research. I will speculate about whether some of these changes represent a better way of doing things and thus ought to change the way we practice after the pandemic.
