Senior Research Nurse / Newborn Screening Project Co-ordinator
Ethics Committee Vice-Chair
Department of Paediatrics
Tell us a bit about your role
I wear two hats: as a Senior Research Nurse, I have been responsible for running the four studies which make up the Dolphin body of research. I joined Professor Sullivan’s group as it’s research nurse to manage the recuiting, consenting and assessment of babies and infants joining the first two studies. I knew nothing about clinical research, but was really interested in becoming involved and learning more. I moved from my role as a paediatric cardiology nurse and learned on the job (it was a steep curve!). I took on responsibility for the management and running of the studies, ultimately becoming Co-Principal Investigator for the final study.
As these studies draw to their close, I have now joined Professor Servais’s group as project co-ordinator for his study of newborn screening for spinal muscular atrophy (SMA). This work widens that within Medical Sciences: by undertaking newborn screening for genetic conditions where therapies and/or clinical trials exist to potentially treatment newborns pre-syptomatically, the possibility exists to profoundly change the lives of families of children with such conditions, and the future of the children themselves.
I have always been interested in the ethics of medical research, particularly from the perspective of patient involvement, and so applied to the HRA to joint an ethics committee as an expert member. I was accepted and joined the Oxford A Research Ethics Committee. Doing so has given me the privileged opportunity to see and consider the ethical implications of some of the incredible work taking place within the Medical Sciences as so many of the studies come to our committee.
I have been Vice-Chair of that committee for the last four years. This can be challenging! The rise of gene therapy research has led to studies with some complex science which ethics committees need to understand in order to be able to meaningfully assess the poterntial risk/benefit impact on those who may take part as participants.
What is the most meaningful aspect of your work?
From a research study perspective, it is definitely having the opportunity to establish a relationship with the families who have decided to take part in the study, being able to understand what taking part means for them and, most importantly, to be able to support them on their journey.
From an Ethics perspective, it is having the opportunity to see the incredible scope of research which is taking place, to understand its huge potential to contribute both to what we know, and what we can do, within Healthcare, and to help researchers consider what they do from the perspective of their participants who are contributing to that knowledge too.
Can you tell us about something you've done, contributed to that you're most proud of?
Without it sounding immodest, it’s knowing that I have brought the Dolphin studies to their successful conclusion and that this couldn’t have happened without me.
But I am perhaps most proud of my work within Ethics and of being in a postion now where I can give advice and guidance to researchers within Paediatrics as they put their studies together, helping them consider the ethical implications of what they doing, and keeping their participants central-stage in their thinking.
What changes would you most like to see in the Medical Sciences in the next 100 years?
Wow, quite a question! But I think I would say I would like to see boundaries dissolve away. Research is at its best when it is truly collaborative; something vividly demonstrated in the recent months with much of the COVID 19 research. So much more can be achieved by the sharing of ideas and efforts. Collaborative effort across the Medical Sciences (and beyond) could mean individual efforts are enriched, and the science which emerges as a result is the better for it.