This project has been funded by a Wellcome Trust Research Fellowship in Humanities and Social Science, from September 2019 to April 2023.
This research project will examine the work of various stakeholders – including UK-based charities and campaigners – who are working to encourage Black, Asian, mixed raced and minority ethnicity (BAME) stem cell donor registration and improve BAME patients’ chances of finding a stem cell match.
What is stem cell transplantation and donation?
Stem cell transplantations are a treatment option for certain patients with blood cancers like lymphomas, myelomas and leukaemias. For this kind of treatment, many patients require a stem cell donor who may be a relative, or somebody who is registered on a stem cell registry who is an adequate tissue match. After blood stem cells are collected from the donor, they are delivered to the patient through a central line in an effort to reconstitute the patient’s immune system.
What’s ethnicity got to do with it?
Bone marrow stem cell transplants require donors to share a Human Leukocyte Antigen (HLA) type with receiving patients. Patients and donors who are siblings have a 1/4 chance of being a match. This is because we inherit our HLA types from our parents. Over many generations, this means that different HLA types are more frequently found in particular parts of the world. Because of this, people who share a similar geographic heritage may be more likely to have similar HLA types. In policy documents and in the health literature in this field, it is therefore understood that people of the same ethnicity stand higher chances of being HLA tissue matches. In part, this research is interested in exploring the way this relationship between race and genetics is understood.
While there are 1.3m registered stem cell donors in the UK, minority ethnicity groups are significantly underrepresented on the registry when compared against their numbers in the population. Because of this, donors can be found for 90% of white blood disorder patients, but only 60% of minority ethnicity patients (UK Stem Cell Oversight Committee 2015). Mixed-raced patients are understood to have still lower odds because of their rarer HLA types.
In response to the lack of donors for BAME patients, charities and individuals run donor recruitment drives and social media campaigns to make the registry more ethnically representative.
What does this project aim to do?
Using ethnographic and digital methods to explore donation drives and social media campaigns, the research will look at how racialised groups are being engaged with in a biomedical context.
From a sociological perspective, the project looks to learn how race may be being used to create community, and what the different outcomes of that use might be. Race is used in different ways to save lives, but biological racial difference may also be reasserted in the process. This project will make a major contribution to understanding how race and the specific category of mixed-race are being enacted in a biomedical context, whilst also providing valuable knowledge to those working to address the significant health inequality outlined above.
The project will ask the following research questions:
- To what extent, and in what ways, are racialised communities constituted through initiatives encouraging BAME people to register as stem cell donors?
- How are mixed-raced bodies understood, and mixed-raced communities constituted, in initiatives encouraging mixed-raced people to register as stem cell donors?
- What are the social, political and ethical implications of these initiatives, and how might sociological theories be further developed to help understand the use of race in biomedical contexts?
If you’re interested in registering as a stem cell donor
This project isn’t seeking to recruit stem cell donors, but you may be interested in learning about different avenues to becoming a stem cell donor. There are different ways to register as a stem cell donor in the UK. You may be able to register through Anthony Nolan, DKMS, or the NHS.