Race-based health care: A comparative study of the use of race-based diagnostics in Europe

Project Information

RaceCareEurope

Grant agreement ID: 101030602

DOI

10.3030/101030602

Project terminated on 17 March 2023

EC signature date 15 March 2021

Start date 1 September 2021

End date 31 August 2024

Funded under

• EXCELLENT SCIENCE - Marie Skłodowska-Curie Actions

Total cost

€ 267 480,00

EU contribution

€ 267 480,00

Coordinated by

KATHOLIEKE UNIVERSITEIT LEUVEN
Belgium

Periodic Reporting for period 1 - RaceCareEurope (Race-based health care: A comparative study of the use of race-based diagnostics in Europe)

Reporting period: 2021-09-01 to 2024-08-31

Summary of the context and overall objectives of the project

The RaceCareEurope, was the first comparative multi-country investigation of the introduction and use of race-based health diagnostics in three different European countries. Inclusion and diversity are currently topical subjects in health research, care and policy in Europe. In recent years there have been calls at national and EU levels for health care professionals, health researchers and policymakers in Europe to attend to diversity and inclusion in health care, research and policy. Here, in addition to gender, migration, sex, religion, language, SES, education, and sexuality, ethnicity and race have become focus points within this so-called inclusion paradigm. With regard to race, one way in which inclusion and diversity has been approached in health care is to introduce race-based health diagnostics. These are diagnostic techniques, tools, calculations, and clinical diagnostic guidelines in which different actions are included for different ‘racial’ groups. ‘Race’ is, however, a highly contested social construct of which the use in research and medicine has been highly debated, especially in the United States the use of this social category as a flawed marker of biological difference has been problematized. Namely, when used in research and medicine this social construction becomes convoluted with alleged biological and genetic differences. From research conducted in the US2, we learn that an adverse broad societal consequence of using the concept of race in health care is that this reifies the idea that racial categories are biological. Furthermore, scholars point to adverse individual consequences for patients, such as being placed lower on organ transplant lists or receiving inadequate post-surgical pain treatment and care. Little was, and still is currently known about the use and consequences of race-based diagnostics in Europe, my own preliminary exploration of this topic in preparation for this proposal indicates that race-based health technologies and knowledge are imported from the US for use in Europe, and subsequently altered to use in the specific national context.RaceCareEurope sought to provide much needed theoretical and empirical understanding of the knowledge sources and scientific considerations driving the introduction and use of the concept of race in European health fields, and to provide for a much needed foundation to reflect and debate the use of the construct of race within the current diversity and inclusion paradigm in the field of health in Europe.

The ultimate goal of the RaceCareEurope project was to understand how race-based diagnostics are currently being used in Europe, and what the individual and societal consequences are. Currently little is known about the use of race-based diagnostics in Europe. Both spirometry and the GFR-estimation are diagnostics used widely in everyday general practices by GPs to determine lung function and kidney function respectively (other race-based diagnostics are much more disease or risk-group specific and used less frequently and less wide-spread). For these reasons, within the proposed RaceCareEurope project the use of these two frequently used race-based diagnostics, namely spirometry and the eGFR equations, will be studied in the three European countries where they are frequently used, namely Belgium, the Netherlands, and France.

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

Work performed:

- Research management: Entailed obtaining ethical clearance for all relevant locations, and securing participation from the desired interlocutors for the project-

- Data collection and fieldwork in the Netherlands: Fieldwork in the Netherlands to conduct document analysis, focus groups, and ethnographic research.

- Knowledge dissemination and exploitation: Drafting one article, and presenting (preliminary) work at international conferences.



Dissemination activities and deliverables:

Helberg-Proctor, A. “Diversiteit & Inclusie in de Zorg”. Erasmus Centrum voor Zorgbestuur. November 17, 2022. Invited speaker.

Care in Black and White: “Race” in Health Care in Europe. September 22-23, 2022. Afroeuropeans Network Conference. Brussels, Belgium. Panel convener and presenter.

Brainwash video Ongelijkheid en Gezondheid. Omroep HUMAN, NPO. May, 2022. Video interview.

RaceCareEurope symposium. April 20, 2022. Amsterdam, the Netherlands. Symposium organizer.

“Rassen bestaan niet. Toch moeten artsen soms ingeven tot welk ‘ras’ hun patiënt behoort”. Eos Wetenschap. Edition 4, March, 2022. Print interview.

“Kleur, cultuur en klasse zijn blinde vlekken in onze gezondheidszorg”. Sociaal.net. March 21, 2022. Online print interview.

Helberg-Proctor, A., Hermsen, P., van Kempen, T. and Norbart, A. “Techniek Discrimineert: De invloed van bias op technologische ontwikkelingen in de (bio)medische wereld”. Nederlandse Vereniging voor Medisch Onderwijs Congres. February 8, 2022. Panel convener and presenter.

Helberg-Proctor, A. (December 14, 2021). De paradox van diversiteit en inclusie in de geneeskunde en zorg. Sociale Vraagstukken. Available: https://bit.ly/3l5RHmk

12th Annual Maastricht Symposium on Global Health. The politics of knowledge production in Global Health: Towards the undoing of coloniality and the revitalizing of lived experiences. October 20, 2022.Invited speaker

Helberg-Proctor, A. (2021). Inclusiviteit in gezondheidszorg en -onderzoek: Historie, kritiek en noodzaak van diversiteit in de zorg. Quintesse, 10(4), 6-13.

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

The first months of the project allowed the researcher to move into a permanent academic position and re-start her academic research career (Assistant Professor, Department of Anthropology, Health, Care and the Body Programme Group, University of Amsterdam). However, very unfortunately this also meant that the project was terminated early.

Dr. Alana Helberg-Proctor