Lecture series discussing ethnicity and screening

S Dyson Research

S Dyson Research

Image: Ethnicity and screening lecture series by Professor Simon Dyson
Creative Commons BY-SA.

Professor Simon Dyson

Undergraduate social sciences and healthcare, postgraduate, healthcare professionals.

OER Features:

Narrated presentation: Ethnicity questions and antenatal screening for sickle cell and thalassaemia.

Narrated presentation: Research study.

Narrated presentation:

Narrated presentation: white carriers of the sickle cell gene.

OER Description:

These open educational resources incorporate a series of 4 narrated presentations, presented by Professor Simon Dyson of De Montfort University. They describe research exploring ethnicity questions and antenatal screening for sickle cell disease and thalassaemia. These are superb resources for any medical and healthcare students and professionals.


Global Sickle Cell Awareness Day on 19th June

To celebrate Global Sickle Cell Awareness Day on 19th June, SCOOTER is releasing a number of high quality education materials on sickle cell and thalassaemia with the education of future scientists and future health professionals in mind. Today sees the release onto SCOOTER of the first wave of such social science resources. These comprise two series of lectures with narrations. They are available in multiple formats including podcasts and PDF files of the slides.

The first is a series of lectures on sickle cell and education, examining the challenges of young people with sickle cell disorder at school. All six lectures can be found here as narrated presentations or notes.

The lectures follow a series of publications of the following journal articles:

Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; and Evans, H (2011) Sickle cell, habitual dyspositions and fragile dispositions: young people with sickle cell at school Sociology of Health and Illness 33 (3): 465-483 [ISSN: 0141-9889] http://onlinelibrary.wiley.com/doi/10.1111/j.1467-9566.2010.01301.x/full

Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; Evans, H and Rowley, DT (2010) Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school Social Science and Medicine 70 (12) 2036-2044. [ISSN: 0277-9536] http://dx.doi.org/10.1016/j.socscimed.2010.03.010

Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2010) Reported school experiences of young people living with sickle cell disorder in England British Educational Research Journal 36 (1): 125-142 [ISSN 0141-1926] http://dx.doi.org/10.1080/01411920902878941

Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2008) Local authorities and the education of young people with sickle cell disorders (SCD) in England International Studies in Sociology of Education 18 (1) 47-60. [ISSN 0962-1214] http://dx.doi.org/10.1080/09620210802196168

Dyson, SM; Atkin, K; Culley, LA and Dyson, SE (2007) The educational experiences of young people with sickle cell disorder: a commentary on existing literature. Disability and Society 22 (6): 581-594. [ISSN: 0968-7599] http://dx.doi.org/10.1080/09687590701560196

The second comprises three lectures around ante-natal screening for sickle cell/thalassaemia and the challenges of attempting to target that screening on the basis of an ethnic/family origins screening question, research that informed the development of the NHS Sickle Cell and Thalassaemia Programme Family Origins Questionnaire.

Narrated presentations and notes can be found on our resources pages. The research informing these lectures can be found in the following articles:

Dyson, SM; Chambers, K; Gawler, S; Hubbard, S; Jivanji, V; Sutton, F; and Squire, P (2007) Lessons for Intermediate and Low Prevalence Areas in England from the Ethnicity Questions and Antenatal Screening for Sickle Cell/Thalassaemia [EQUANS] Study. Diversity in Health and Social Care 4 (2): 123-35. [ISSN 1743-1913] http://www.ingentaconnect.com/content/rmp/dhsc/2007/00000004/00000002/art00006

Dyson, SM; Cochran, F; Culley, LA; Dyson, SE, Kennefick, A; Kirkham, M; Morris, P; Sutton, F; and Squire, P (2007) Observation and Interview Findings from the Ethnicity Questions and Antenatal Screening for Sickle Cell/Thalassaemia [EQUANS] Study. Critical Public Health 17 (1): 31-43. [ISSN 0958-1596] http://dx.doi.org/10.1080/09581590601045188

Dyson, SM; Culley, LA; Gill, C; Hubbard, S; Kennefick, A; Morris, P; Rees, D; Sutton, F; Squire, P (2006) Ethnicity Questions and Antenatal Screening for Sickle Cell/Thalassaemia [EQUANS] in England: A randomized controlled trial of two questionnaires. Ethnicity and Health 11 (2): 169-189. [ISSN 1355-7858] http://dx.doi.org/10.1080/13557850500460348


We would appreciate your feedback on these resources and whether you found them useful and how you might intend using them, either yourself as an interested member of the public, as an educator or as a student. Please complete our resource surveys included on each page.

Professor Simon Dyson, De Montfort University

Sickle cell and deaths in custody

Deaths in Custody Book Jacket

We know that sickle cell disease is a vital part of the science curriculum in universities. But how can it inform the social science and humanities sections of the academy? One example is through my work on the relationship between sickle cell and sudden unexpected deaths of Black men in police or prison custody.

At De Montfort University, the work on sickle cell and deaths in custody (Dyson and Boswell, 2009) informs the youth and community development curriculum. One element of this is to encourage students who will work with young people in a multi-ethnic society to understand the ways in which White people enjoy cultural, material and symbolic resources, that, usually without any critical reflection on their part, they then regard as the natural order of things. The research work drawn upon illustrates this general principle in the case of sudden death of Black people in custody. The research shows how official accounts of sudden deaths of Black people in state custody draw upon two contradictory discourses. When a Black man dies in police or prison custody and is found to have sickle cell trait at autopsy (all people with sickle cell trait would show sickled cells at autopsy) the death is attributed not to violence, restraint, positional asphyxia, use of conductive electrical devices or pepper spray, but to “unexpected”, “rare”, “natural causes” that officers “could not be expected to know about”. Conversely, there are documented deaths in police and prison custody of people whom it is known have the full medical condition sickle cell anaemia, but whose requests for preventive or emergency treatment are systematically denied, leading to their deaths under police or prison jurisdiction.

Deaths in Custody Book Jacket

The lecture and discussion based on this research contributes to several of the learning outcomes for a module entitled “Black Perspectives”, which aims to: (1) Present a critical appreciation of the relationship between Black people and non-Black people; (2) Analyse a contemporary issue of significance to the Black Community, and (3) Reflect on individual learning during the module and explore how the module content and the group  work undertaken contributed to them working toward enhanced practice based on knowledge, experience, and skills.

This session contributes to the wider BA (Hons) Youth and Community Development programme aim of challenging taken-for-granted assumptions of students, in this case by exploring the complex ways that, even in death, the social experience of Black and White people is not the same.

Research References

Dyson, SM and Boswell, GR (2009) Sickle Cell and Deaths in Custody London: Whiting & Birch 

Blog Post by Professor Simon M Dyson

Unit for the Social Study of Thalassaemia and Sickle Cell,
De Montfort University