EB’s impact on family planning decisions
By Mia Keating
Hello everyone, my name is Mia Keating. I am a third-year master’s student at Cardiff University, where I am studying for my MSc in Genetic and Genomic Counselling. I am working with DEBRA UK for my final year research project, where I am looking at the impact on family planning decisions for wider family members of individuals affected with EB.
Which aspect of EB are you most interested in?
As well as my experience in genetic counselling through my master’s degree and clinical placement, I have experience working in both a reproductive genetics laboratory and a fertility clinic. From this, I have developed an interest in family planning decisions within families that are affected by a genetic condition.
I have seen people make a range of decisions as to how and if they start their families in line with their values and beliefs, and overall, it is a huge decision. For those who have a genetic condition within their family, this can be an extra factor that they may want to think about.
I believe that information regarding genetic conditions should be fully accessible to people to help them make that big decision of how they want to proceed with their families. This allows each person to be confident with their decision, whatever it is that may best suit them.
What difference will your work make to people living with EB?
By speaking with wider family members about family planning, I am hoping to identify whether they feel well informed regarding their choices or if further support and information may need to be provided by DEBRA UK. I am hoping to produce both a written summary and a video that will be accessible for members of DEBRA UK, to allow them to understand the feelings of wider family members regarding family planning. My study will also inform DEBRA UK on what they can do to further support people making family planning decisions.
Why did you choose to work with DEBRA?
For myself I am aiming to gain a greater understanding of EB and the lived experiences of families affected by it. I am hoping that once I graduate and begin clinical work, I will be able to share my understanding and experience with others and help do my part to raise awareness of EB and advocate for those affected by EB.
Since working with DEBRA UK, I have found myself constantly motivated by their members, such as watching Isla Grist advocating on the BBC and other outlets.
I feel grateful to have this opportunity to do my research with DEBRA UK and their members and to hopefully do my own part to help raise awareness of EB and advocate for those affected with the condition.
What does a week in your life as a MSc Genetic & Genomic Counselling student completing their final year research project look like?
My weeks are usually quite organised as I work full-time while balancing my studies, but I work remotely so I have some flexibility. I work from 9-5, and then usually go for a walk on the beach to help decompress from work. Then it is back to my desk for some University work. My partner Luke usually cooks our dinner which I am very grateful for as it gives me some more time to study, but I do the washing up! The past few years I have been working on assignments, but now I am completing my research project my evenings have involved working through my ethics application for this project, reading literature and working on some recruitment material.
How do you relax when you are not working on your research project or studying?
When I am not studying or working on my research project I love to relax by baking, being outdoors hiking or cycling, exploring local coffee shops and reading. My favourite genre is sci-fi, and any book recommendations are welcome! I am also a big animal lover and always find it a great stress reliever to spend time with my partner’s dogs, or my dog, Milo, who I have included a photo of here!
Thank you for taking the time to read about me and my research project. If you are a wider family member of an individual affected with EB interested or know someone who is and may be interested in helping take part in my project please contact me on keatingme@cardiff.ac.uk. I am recruiting up until January 2025.
