Race in health research: Considerations for researchers and research ethics committees

• Jurisdiction: South Africa
• Date: 01 April 2023
• Pages: 9-12
• Author: W van Staden,A Nienaber,T Rossouw,A Turner,C Filmalter,A E Mercier,J G Nel,S Bapela,M M Beetge,R Blumenthal,C D V Castelyn,T W de Witt,A G Dlagnekova,C Kotze,J S Mangwane,L Napoles,R Sommers,L Sykes,W B van Zyl,M Venter,A Uys,N Warren
• Published date: 01 April 2023
• DOI: 10.7196/SAJBL.2023.v16i1.440

April 2023, Vol. 16, No. 1 SAJBL 9

ARTICLEARTICLE

Researchers have sought guidance on the issue of race in health

research from the Faculty of Health Sciences Research Ethics

Committee at the University of Pretoria, South Africa (SA). We

presume that other ethics committees and researchers across SA

may have had similar enquiries, and have also been concerned about

using race as a variable or in defining the study population in health

research. There have also been calls for greater institutional oversight

regarding race-based scientific claims, averting a racialisation effect

that may feature, for example, in pharmacogenomics and medication

design.[1] In response, we authored this working document on this

rather sensitive issue, extracting guidance from a vast body of

literature. We anticipate that not everyone may entirely agree with

all the contents, but it may nonetheless be useful in deliberations

through which the contentious aspects may further be considered

and applied in specific contexts. Our point of departure, expounded

elsewhere, is that the issue of race in health research is a matter of

ethical deliberation applicable to a specific study.[2]

From a vast literature on race, introduced for example in the

SA volume Fault Lines: A Primer on Race, Science and Society,[3] this

article extracts rather high-level aspects that may serve as accessible

guidance to researchers without unpacking the multiple intricacies

and conceptual relations. We modestly confine the article to

addressing the need for justification when using race as a variable or

in defining a study population, the problem of exoticism, outlining

distinctions between race, ethnicity and ancestry, the naming

of races, and genetic research and variables that may be more

suitable than race. Each of these issues is briefly introduced below to

contextualise the subsequent checklist that researchers and research

ethics committees may find useful.

Justification rather than a routine

parameter

As is evident in several publications,[4-7] the practice by which race is

routinely included as a variable or a way to qualify a study population

in health research is scientifically weak, and thereby strongly

discouraged. Rather than a routine inclusion, if included at all,

scholarly justification should be provided for this inclusion, whether

it be scientific, social, political or otherwise. The scientific justification

for this inclusion should not be a mere statistical association, for many

other actual factors may underpin an apparent racial association

(e.g. geographical, environmental, dietary, socioeconomic and other

factors). The scientific objective is therefore not to mistake race for

an actual variable when it is merely a proxy for another variable. The

risk is that racial prejudice may be mistaken, overtly or tacitly, as a

scientific justification.

Furthermore, researchers should carefully consider the most

scientific way to define a study population, rather than assuming that a

racial definition is the most appropriate. For example, when biological

research on a particular topic has been done among Northern

Americans or Europeans but not yet in Africa, the population for

which there would be a paucity of research is a matter of geography

or geography-related factors, and not necessarily that of race per se.

Mere racial prevalence or assumptions of racial homogeneity in a

given context in Africa (or Northern America and Europe) would not

be a good enough scientific justification.

Requiring justification for using race as a variable or to qualify

a study population should not be mistaken for dismissing the

importance of race where it is indeed relevant. Among many examples

of justified uses of race in health research, race may have value as a

This open-access article is distributed under

Creative Commons licence CC-BY-NC 4.0.

Race in health research: Considerations for researchers and

research ethics committees

W van Staden, MBChB, MMed (Psych), MD, FCPsych (SA), FTCL, UPLM; A Nienaber, BA Hons, LLB, LLM, LLD;

T Rossouw, MB ChB, MPH, MPhil (Applied Ethics), DPhil, PhD; A Turner, MB ChB, MMed (Pub Health Med), FCPHM; C Filmalter, MCur, PhD;

A E Mercier, MB ChB, MSc, PhD; J G Nel, MB ChB, MMed (Haematology), PhD, DCH; S Bapela, Dip Theology Ministry;

M M Beetge, MChD (OMP), DipDent (Aesthetic Dentistry); R Blumenthal, MB ChB, MMed (Med Forens), PhD, FCPath (SA), DipForMed (SA);

C D V Castelyn, MDiv, PhD; T W de Witt, MB ChB, MMed (Paed), DTE; A G Dlagnekova, MA (Clin Psychol), PhD;

C Kotze, MB ChB, MMed (Psych), PhD, FCPsych (SA), DMH (SA); J S Mangwane, MB ChB; L Napoles, BSc, MPH;

R Sommers, MB ChB, MMed (Int), PharmMed, PhD; L Sykes, BSc, BDS, MDent (Pros); W B van Zyl, MSc, PhD; M Venter, MSc, PhD;

A Uys, BChD, MSc (Maxillo-facial Oral Radiol), PhD; N Warren, BChD, MSc (Odont)

Faculty of Health Sciences Research Ethics Committee, University of Pretoria, South Africa

Corresponding author: W van Staden (werdie.vanstaden@up.ac.za)

This article provides ethical guidance on using race in health research as a variable or in defining the study population. To this end, a plain,

non-exhaustive checklist is provided for researchers and research ethics committees, preceded by a brief introduction on the need for

justification when using race as a variable or in defining a study population, the problem of exoticism, that distinctions pertain between

race, ethnicity and ancestry, the problematic naming of races, and that race does not serve well as a presumed biological construct in

genetic research.

S Afr J Bioethics Law 2023;16(1):e440. https://doi.org/10.7196/SAJBL.2023.v16i1.440