Meet One of Our Lead Investigators: Dr. Megan Allyse
Meet Dr. Megan Allyse, the co-principal investigator for this study. Dr. Allyse received degrees in International Relations and Communications from Standford University. She then went on to receive both her Master’s degree in Science and Policy and her Ph.D. in Sociology and Social Policy from the University of Nottingham.
Dr. Allyse is now an Associate Professor of Biomedical Ethics at the Mayo Clinic, where her research group studies translational and emerging medical technologies from their start as research endeavors into their applications into clinical practice. Previously, her research team focused on understanding how novel medical technologies impact families and communities, which is why she is spearheading this study's family and community-facing arm.
When asked how this study came about and what motivated this research, Dr. Allyse discussed her previous studies investigating parents’ and caregivers’ thoughts on the role of various interventions for Down Syndrome. Her research group noticed that the majority of participants involved in the studies were strongly apprehensive about interventions involving genetic therapies. Dr. Allyse said, “This started a really interesting conversation about the why…What is it about that prenatal period? What is it about gene therapy? What is it about any of these things that makes these families so ambivalent about these types of interventions? That’s when we [PaSAGE team members] started designing this study.” When asked about the criteria for the conditions involved in the PaSAGE study and why they were chosen, Dr. Allyse stated, “This is about a large body of very legitimate, ethical gene therapy research that is going on around the world. So when we picked the conditions for the study, it was based on a theoretical model of various things like whether the condition is usually fatal or whether it happens in childhood or later in life. But they are all conditions on which there is active genetic research and active research on genetic approaches…It was very important to us to stay close to the science and not have conversations about science fiction.”
Dr. Allyse is extremely passionate about translational justice and applications of health equity. She stated, “This particular study focuses on translational justice in genetic therapies for some genetic conditions, but really, theoretically, we should all be going through this process of inclusion and equity research…that is why it’s very important to talk to people along that entire spectrum [community and patient stakeholders such as the PaSAGE target study participants] and really try and understand not just where things could go wrong but how to help things go right.”
A fun fact about Dr. Allyse is that a couple of years after graduating college, she was a competitive amateur ballroom dancer!