Tell us a little about your background in genetic counselling and what drew you to apply for this novel research post?
My interest in pursuing a career as a Genetic Counsellor was inspired through my early work as a science communicator on rare diseases; demonstrating the impact of these many conditions on the patients and their families.
It was the first time I was introduced to the concept of genetic counselling, and it gave me a real insight into the pivotal role it plays in empowering patients to cope with difficult and complex diagnoses. I was struck by how invaluable this service was for enabling people to gain back control of their lives; offering them clear direction and choices, and allowing them to make informed decisions through the power of knowledge. This inspirational experience prompted my transition from science communication, into the sphere of genetic counselling.
It was upon starting my genetic counselling career at the Manchester Centre for Genomic Medicine, and an encounter with Professor Lauren Kerzin-Storrar (who set up the first Masters training programme for Genetic Counsellors in Manchester) that it became obvious to me that data inequality was having a direct impact on frontline clinical work, and who the genetic counselling profession was actual able to help.
Anecdotally, I noticed that the cultural diversity present within the broader Manchester metropolitan community, was not always seen in my clinics. In addition both the data used to inform genetic counselling, and the representation present within the Manchester genetic counsellor workforce was even less representative. I began to wonder how such gaps could affect a service and its ability to serve all communities effectively.
This was a pivotal moment in my career, where four very prominent and powerful questions started to follow me around:
- Where is the science needed to support members of the Black and other minority communities?
- Why does the genetic counselling workforce lack equity and diversity?
- What does the science need to do to serve all communities fairly?
- What questions need to be asked of diverse communities, to empower the workforce to support them in a culturally relevant way?
These questions were emphasised on a professional trip to South Africa, which served to highlight the same inequalities, despite the stark difference in the demographics, compared with the UK. I was still the only black woman working as a genetic counsellor, in a country where this is not a minority group.
It appeared that the cultural values surrounding genetic counselling were the same across the globe, and a lack of representation continued to impact the genetic counselling model I experienced in South Africa.
Later my role as Principal Genetic Counsellor at Guy’s and St Thomas’ Hospital (GSTT) in London accelerated my involvement in this area. Through GSTT I ran the first equality and diversity course for genomic professionals, which informed by my cultural communication teaching for trainee Genetic Counsellors in England and Wales.
Discovering this PhD role, a few years after an encounter with Professor Anna Middleton on that trip to South Africa, was an enlightening moment. I saw a tangible opportunity to pursue the answers to those questions that had been gaining momentum in global realities I was experiencing. This is a genuinely exciting opportunity to examine cultures, communities, and the workforce serving these multicultural communities.
As a clinician in genetics these are areas I feel compelled to address, so that the future of the care we deliver remains holistic and provides a diverse workforce to support a diverse clinic, for true patient benefit across all communities.
Through your clinical work have you witnessed any impacts from current race inequities that exist in research?
Having been a Genetic Counsellor for over 10 years, I have worked with many families where the interpretation of their diagnosis has been dramatically changed thanks to the value of an emerging increase in data diversity. However, what my experience with diverse communities has identified above all else, is that a step back to learn how to ask the right questions, in a culturally sensitive way, could help us to embark on obtaining an effective diversity of datasets.
There is probably a whole social science piece missing, which we need to define the right toolkit to ask and answer valuable questions, to translate genomic research into future patient benefit.
Will these experiences shape how you approach this project? Are there specific methodologies you are looking to apply as a result?
Just as many of the answers around “what data is it that we need?” sit in the social-cultural context in which we pose our questions, I am looking to bring a combination of both health science and social studies to the project. And I hope that this mixture of qualitative and quantitative approaches stimulates new and interesting social outcomes.
Are there any specific outcomes you are anticipating from the results of this project?
The curse to any researcher is always the need to challenge your own viewpoint. That said, I believe my background and experiences will provide a resilience to any potential biases, which will enable me to be open-minded to new questions, which may have the potential to lead to surprising outcomes.
As a Black women in science, I am used to being the only one in the room, so I feel best-placed to take on this courageous research endeavour. I think my blend of clinical and research experience, along with a scientific mind, will enable me to approach the right questions with an awareness of my own bias, leading to the outcomes needed to address inherent issues.
I think we will see just how important it is that both research and clinical practice work hand-in-hand to gain the right cultural and social insight, to have the greatest impact to health outcomes and workforce empowerment.
What challenges are you most looking forward to working through on this project?
Being involved in a new frontier of research, and being encouraged to look at a problem in an innovative and exciting way.
Thanks to the enhanced studentship stipend, I am also really excited that I will be able to focus solely on this project, without the need to juggle other professional responsibilities. This generous opportunity will enable me to stretch my own potential, whilst embracing being part of a community that I can also view through a researcher lens. This environment will give me the support and protection to ask controversial questions.
What advice would you share with other early career researchers of Black heritage?
Try to recognise that you not imagining your experiences – instead, look for spaces and platforms to talk about these experiences and empower others with that knowledge. It is important to find the right networks to seek support from, and this does not necessarily have to be those you can relate with, but it could also be with those who are able to speak in spaces you are unable to. Find people who can advocate on your behalf!
Most importantly find the strength to seek out what it is you both deserve and need.
We are thrilled to welcome Sasha to this exciting PhD project! Maximising the real-world benefits of science requires inclusivity and representation of our diverse populations. We look forward to Sasha’s work on race, ethnicity and research practices, which we hope will ultimately influence experimental design considerations across genomics-based research
Dr Hayley Clissold
Research Culture Lead, Wellcome Sanger Institute