Author: Science Communication Unit

The Science Communication Unit team have the pleasure of visiting conferences, meetings and events throughout the year, often discovering contemporary and interesting work in the process. In the first of a series of new blog posts from people and organisations we meet on our travels, Dr Marie Nugent introduces work she’s been undertaking and how that resonated with a Netflix TV show.

Dr Marie Nugent

I love my job. I get to spend my time thinking about the complexities of trust, involvement in and benefit from research and I’ve been doing this work for over a decade. The big focus for me for the past two years is sickle cell. Sickle cell is an inherited genetic condition affecting the haemoglobin in the red blood cells, which affects approximately 15000 people in the UK, although this is largely regard as a huge underestimation and the number is growing (Sickle Cell Society). It doesn’t take too long for those who work on sickle cell but with no lived experience of it, such as myself, to appreciate that this is a condition that is unique in the context of health inequities, trust and wider society.

When I first saw Netflix announce the new series “Supacell” I was so excited to see how it framed sickle cell and the long-term substantial neglect people living with this condition have faced from Western medicine and biomedical research. In the UK, the All Party Parliamentary Group for Sickle Cell and Thalassemia published the ‘No one’s listening report’ in 2021 highlights this. The report leaves no doubt that racism is the main explanation for neglect of the condition and the continued difficulties people with sickle cell still face today. I was curious to see how this would be presented in the series as, in my experience, talking about racism in the context of sickle cell health research and services is not easy.

If you haven’t watched it, you must. Especially if you work in health or biomedical research in any capacity. It’s got everything. Complex, nuanced characters, high drama, beautiful cinematography, a killer storyline. It’s a true origin story told through a clever and authentic Black British production that takes the tired old superhero trope and transforms it into one of the most gripping, exciting and refreshing series I’ve seen for ages. It also does something truly remarkable. It’s a top-rated series on a major global network that talks about sickle cell and makes it the root of super power capabilities, absolutely smashing taboos around the condition.

The main protagonists are a group of five from South London, where the biggest population of people affected by sickle cell reside, who over the course of the series are revealed to have different super powers; Michael, Tazer, Sabrina, Andre and Rodney. I commend that it doesn’t try to teach you about sickle cell. It peppers bits of information and invites you to investigate further. For those who know very well what sickle cell is, especially those living with it, it shows you are seen, you are heard and your stories are out there. It’s not until episode 5 that an explanation is provided at to how supacells are linked to sickle cell. Here we find out that it is a variant of sickle cell that lays dormant becomes active under the right circumstances, triggered by a threat or stress. This is a nod to the origin of sickle cell which is deemed a natural response to develop immunity to malaria for populations most at risk to this disease.

I’ve never had the experience of watching such an incredible story unfold so closely related to my job. I couldn’t help but take note of anything I noticed that reflected my own knowledge and findings of building trust, coproduction and participation in research.

Here’s what I noted and how it reflects what I understand to be poor practice:

Early scenes depict people in dungeon-like prison cells underground, yet with glass walls along a corridor displaying that occupants have some basic ‘home comforts’. It cuts to a black woman trying to escape the facility who is shot dead. Her body is dragged along the floor past other cells so people can see the blood trailing on the floor. Next, we see a pretty brutal post-mortem process with complete disregard for her body.

This to me was a clear metaphor for the violence of scientific and medical racism. With little regard for the humanity of the people being studied, it’s cold, distant and violent. It also offers a nod to the complete ignorance of different cultures and how they practise sanctity of the body. Other examples dotted throughout the series include people being referred to using  dehumanising terms like ‘asset’ or ‘target’. There are many known examples of the experimentation on black bodies for the curiosity of doctors and scientists, such as the exploitation of Henrietta Lacks and the Tuskegee trials in the US that ran for decades up until the early 1970s. Today, statistics show the increased risk in health outcomes people from black communities face, for example we know black women are four times more likely to die in childbirth than their white counterparts, and were five times more likely only a few years ago. This cannot be explained without acknowledging racism is at play. In this scene Supacell directly addresses this within the first few minutes.

I am a white woman and noticed that all the people working for what we learn to be an underground operation, linked to a new specialist sickle cell centre, are white, faces often covered and in some uniform – military or medical – except the big bosses who are suited and booted and highly corporate. The frontlines of colonialism. The only notable exception is when a new member of staff, with a darker skin tone, joins a white woman. It transpires the white woman is at the top for the sickle cell facility with the two of them planning to recruit a new patient from a hospital bed. This patient is the mother of Michael. The white woman states she is there to answer any of the patients questions, gives the sales pitch, hands over a leaflet and then leaves before any further dialogue is possible. Her new colleague is left behind, despite her stating she’s really new and doesn’t know much yet.

White privilege and institutionalisation can mean people working for institutions are predominantly white, middle or of a higher social class, and appear anonymous or invisible to communities. Medicalised racism is still a huge issue in the context of health research inequities, whilst ‘representation politics’ in Western societies can raise concerns about people from minoritised ethnicities being used to ‘diversity wash’ a predominantly white work force. This can be a particular concern when it comes to who works with community members so organisations are seen to be more representative and more palatable, as appears to be the case in the scene above. Clearly, using representation in this way could be seen as coercive behaviour and really damages the ability for people to trust in research that claims to be for the benefit of all, with the potential to further exacerbate existing health inequalities.

References to a new specialist sickle cell centre start to pop up in conversations across the main characters. In the community, someone talks about being given £100 for a blood donation at the new centre. ‘I’d give my whole blood for that!’ Later on, we see Michael’s mother in the new sickle cell centre having a crisis. She calls her son on the phone for help from her hospital bed. When Michael arrives and a nurse arrives, it is clear from the nurses comments that there is a huge lack of understanding of sickle cell, despite being in a specialised sickle cell centre. As Michael enters the reception area, someone in the background assumed to be talking to a patient says ‘doctors know so much now, I need you to be confident’.

Next Andre gets recruited by the underground research facility to help recruit more supacells for research. He’s recruited by a suited white man who says he wants to pay Andre well to bring in others like him and learn how to help supacells manage their abilities so they aren’t a risk to themselves or others, before they let them go. We already know this not to be true. Later we see that Michael is given an injection that inhibits his superpower, a sign of what the research centre could really be developing.

Coercive practices in research recruitment are another known problem and can include substantial payment for participation and/or a lack of transparency as to the real intentions of research participation or the harms it could cause. Many different authorities in the UK ensure no coercive practices are now conducted in research but ensuring better practice can go beyond legal methods. In my role I support Patient and Public Involvement and Engagement or PPIE and community engagement. This activity is recognised as being crucial in building trust and understanding between institutions, services and communities. There can be complexities, including how to create a true space for open dialogue, and coproduction and, for those institutions like mine, how to create opportunities to reflect on where the power to change sits and dissolve barriers to trust and involvement.  Meaningful coproduction is an effective early way to address barriers to trust by the use of good quality engagement practices embedded within research programmes. The temptation to mis-use PPIE and community engagement as comms and stealth recruitment activity for research is still a challenge. Many people from black communities have good reasons not to partake in research and, in the wrong hands, PPIE can ignore the need for change on the side of the institutions for truly informed consent and participation.

Supacell has totally broken the taboo surrounding sickle cell and has creatively presented the condition in such a way that both challenges stereotypes of those affected whilst reflecting back at us all the harsh realities of what research and medicine has done to those most vulnerable in our society. And for whose benefit?

There is still a huge gap in what we know about sickle cell and effective treatment options. What is exciting right now is that things are changing and sickle cell is an exciting area to be in as someone working in health and research. Programmes of work in health services, research and new treatments are being developed providing sickle cell and those living with it, with the attention desperately needed. People campaigning tirelessly to support and advocate for people affected are breaking through and creating change. I’m proud to work in close partnership with national charities and work directly with patients and advocates to develop engagement in genomics and I’m inspired every day by what is possible.

Dr Marie Nugent:

Marie has a PhD in Genetics and has spent the past ten years as a research engagement specialist in health and science. She has worked over the past two years developing engagement for a sickle cell genomics programme. She is now a trainee genomic counsellor within the NHS with a keen interest in continuing to research equitable practices.