Defining race and ethnicity in Optometry.

Abstract

The importance of race and ethnicity within life in general, and in all branches of medical care including Optometry is under serious debate. While one might argue that any discussion of this subject will generate controversy, the topic of diversity is one that must be addressed, as it relates to patient care, optometric education and scientific research. As an example, one only has to look at the disparate effect of the current COVID-19 pandemic on marginalised communities,1 which has led to widespread calls for the collection of more data on race and ethnicity within general medical practice in the UK.2 But even if it is agreed that collecting data is vital, the question remains as to the most appropriate categorization to adopt, and the purported biological or sociological nature of these divisions.3 Modern racial thought is believed to have its origins in the work of Francois Bernier, a French traveller and physician born in the 17th century.4 His writings may be one of the first attempts at racial classification. Bernier's early categorizations were based solely on physical attributes such as skin colour and body shape. For many, this was the start of the idea that race is a part of natural diversity to be evaluated and observed. The racial classification in science truly took hold in the 18th century, and became more nuanced in its nebulous definitions as the years passed. Scientists and medical providers were early adopters of modern racial thought, and it is not difficult to figure out why. Placing subjects or people into discrete categories that can be digested for research and diagnosis is the foundation of modern medical and scientific reasoning. But this is not without risk, and regrettably there is a long history of so-called scientific trials that have sought to claim the superiority of one race, religion or skin colour over another. Race has been defined as “a grouping of humans based on shared physical or social qualities into categories generally viewed as distinct by society”.5 The term distinct, i.e., recognizably different, is certainly open to interpretation. The publication manual of the American Psychological Association describes ethnicity as “shared cultural characteristics such as language, ancestry, practices and beliefs”.6 In New Zealand, for example, the term “race” is generally avoided (apart from racism) and only ethnicity is used. In Australia, “indigeneity” is a key category. The UK Office of National Statistics notes that ethnicity may be determined by the country of birth, nationality, language spoken at home, skin colour, national/geographical origin, religion or a combination of these factors.7 A common theme through many of these descriptions is that they mention nothing of the person's genetic structure or physiological attributes. Indeed, Brawley noted that the categorisation of populations may actually be more of an art than a science.3 The racial awakening that many experienced in 2020 has led to a re-examination of how we speak about race and ethnicity. There are few places where this re-examination is more important than as it relates to health and medicine. In the United States, the designations “Black” and “Hispanic / Latino / Latinx” are often associated with poorer health outcomes across a wide spectrum of diseases and disorders.8, 9 However, these unsatisfactory results often have little to do with genetics or composition and everything to do with the structural inequities that make it harder for these populations to thrive. In North America, it is standard practice when presenting or referring to a clinical case to begin the presentation by stating the patient's age, race and sex. For example, one might start with: “A 55-year-old Asian man presented with...” This is the opening of the case history for many when documenting findings in a clinical record. Each element of that sentence is intended to relay critical information about the patient to help a clinician outline differential diagnoses and determine a treatment plan. A key question is how critical is the term “Asian” in reaching that goal? The standard racial and ethnic designations in the United States are Asian, Black, Hispanic / Latino and White. These categories may prompt the provider to start considering a limited list of potential diagnoses based on the patient's profile. But is it necessary, is it medical information and should it alter how the patient is managed? The racial categories described above are also commonly adopted in clinical research trials. As an example, the Collaborative Longitudinal Evaluation of Ethnicity and Refractive Error (CLEERE) study examined ocular component data in African-American, Asian, Hispanic, Native American and White children.10 Even today, these five divisions, plus Native Hawaiian or Other Pacific Islander, remain the racial and ethnic categories listed by the US Federal National Institutes of Health Diversity Programs.11 These categories may be too broad and ill-defined to be particularly useful. African-American is not analogous to Black, since the former implies a place of origin, which might be inappropriate for an individual who came from the Caribbean or Pacific Islands. Others may be less aware of their precise place of origin. In addition, should we categorize some individuals based on the colour of their skin while others are defined by geographic origin, e.g., Hispanic? Even the latter term is troubling as it is generally used to refer to individuals from Central and South America. And yet the Oxford English Dictionary defines Hispanic as “relating to Spain or to Spanish speaking countries”. Many would not place people from mainland Spain into this category, and it appears to exclude Portuguese-speaking Brazilians. Additionally, Spanish is an official language of Equatorial Guinea, which is located on the west coast of Central Africa. The continent of Asia covers over 29% of the Earth's land area and in 2015 comprised around 4.5 billion people, accounting for about 60% of the world's population. Accordingly, is it reasonable to combine such a large proportion of the world's inhabitants into a single category? It seems unlikely that individuals originating from countries as far apart as Turkey and Korea share many genetic attributes. Indeed, the prevalence of myopia has been widely reported to be higher in “Asians”.12 But the percentage of myopes in the populations of Iran and China are markedly different,13, 14 and therefore these cohorts should not be grouped together. The category of “White” is perhaps even more difficult to define,15 and often is considered to be “none of the above”. It can be used to encompass individuals originating as far apart as North Africa, Western and Eastern Europe, North America and both European and Asian regions of Russia. Caucasian is not an equivalent descriptor, since it originally referred to the Caucasus region of South Eastern Europe, located between the Black Sea and the Caspian Sea. Further, it originated as a way of classifying White people more favourably.6 The use of racial designations becomes even more complicated when we examine those who identify with more than one racial community. Humans are born with genetic ancestry but assigned a race. The designation that society gives them may be different from the one they would choose for themselves. For example, how should one classify someone with a White mother and a Black father? In many cases, the person's phenotype determines the box that society puts them in. If a person has darker skin, they are generally considered Black, but if they have lighter skin they will often be identified as White. An individual may choose to select one race over another based on their experience. Should we classify someone into a single category if multiple designations apply? It seems reasonable that they be provided with the option to self-define into more than one group. Alternatively, do we need to widen the classification options, or perhaps reframe the way we think about race for these individuals? So how to proceed? The first question is whether race and ethnicity should be considered relevant parameters in Medicine and Optometry. There are published findings indicating that the prevalence of certain ocular abnormalities varies with ethnicity. For example, the prevalence of glaucoma in Black subjects was found to be almost three times the age-adjusted prevalence in Whites.16 However, even this conclusion may be oversimplified since Kosoko-Lasaki et al.17 observed that the prevalence of primary open angle glaucoma was significantly lower in Afro Caribbean patients living in London than those residing in St. Lucia or Barbados. Further, how do we separate economic status from ethnicity? Other factors such as diet and lifestyle choices must also be taken into consideration. Critical topics such as inequality of care and the under representation of minority groups within clinical trials and even in the health care professions themselves cannot be evaluated without high quality racial and ethnic data. The International Committee of Medical Journal Editors (ICMJE) recommend that “authors should define how they determined race or ethnicity and justify their relevance”.18 Precisely how these terms should be defined and justified remains open to question. A scientific journal must strive for accuracy and precision, and yet it is clear that much of the present terminology fails to meet such standards. Ill-defined, imprecisely measured, inappropriately labelled and inadequate reporting is clearly open to misinterpretation and must be avoided.19 Therefore, using only four or five categories of ethnicity may be too simplistic to provide useful information. The 2021 UK census form for an English individual included five ethnic groups, namely: (i) White, (ii) Mixed or Multiple, (iii) Asian or Asian British, (iv) Black, Black British, Caribbean or African and (v) Other Ethnic Group.20 But each of these classifications was then subdivided into multiple options, for a total of 14 choices, plus the option to write in an additional response other than those listed. For example, Asian and Asian British was subdivided into Indian, Pakistani, Bangladeshi, Chinese and Other. The 2019 Australian Standard Classification of Cultural and Ethnic Groups comprised nine broad categories: (i) Oceanian, (ii) North-West European, (iii) Southern and Eastern European, (iv) North African and Middle Eastern, (v) South-East Asian, (vi) North-East Asian, (vii) Southern and Central Asian, (viii) People of the Americas and (ix) Sub-Saharan African.21 These reflect geographical origin rather than race, and each of these locations are then subdivided into more specific locations with a total of 278 cultural and ethnic groups, including 24 residual (‘not elsewhere classified’) categories. In an examination of how race, ethnicity and ancestry are used in biomedical research, Bonham et al. wrote, “It is time to bring together genomics researchers, clinical laboratories, social scientists, medical educators and biomedical journals to identify common ground on the use of race and ethnicity, and to help the public understand the rich diversity and common history of all people”. A more standardized approach to data collection is required that reflects different aspects such as social and cultural identity, family background and ancestry.22 We believe that racial and ethnic data represents essential information that must be collected. It is a critical step in achieving equal treatment for all. But as with every clinical and research parameter, race/ethnicity needs to be defined and classified in a standardized, reproducible manner to provide valuable information. For example, there are many who claim that genetic similarities between those of African descent can play a role in accurate diagnosis and drug dosing. The erasure of race from medical research and health care may ignore vital data that could help to treat patients with more precision and accuracy. Ibram X. Kendi wrote that “race is a mirage”.23 It is a construct of ideas that are gathered to classify and discriminate between people. If we are to move forward earnestly in our professions, we must consider it to be a meaningful scientific category. We must ask ourselves if the way we casually list race is reflective of the rich tapestry of human diversity that we encounter both personally and professionally. As we continue to evaluate how to use racial designations in scientific and health-related fields, at a minimum we must acknowledge the social determinants of health and political ideas that define racial designations. We must reflect on how this impacts the conclusions and diagnoses that we encounter in our work. We are aware that this editorial raises more questions than it provides answers, but the hope is that conversations like this will open the minds of those in eye care, as well as members of other professions. If we are to advance the way we provide care, teach and undertake research, then we must all embrace the mind set of diversity, and endeavour to have it exemplified in all areas, whether in the examination room, the classroom or the laboratory, as it facilitates better productivity and improved patient care outcomes with much greater satisfaction. It is necessary to push an agenda far broader than simply being anti-racist, because that is not enough. We must employ new tools to embrace the theoretical changes that will enable diversity and inclusion to be the new status quo. As ambassadors of eye care, we must challenge each other to be as intentional in our pursuit of diversity, equity and inclusion as we are in our intellectual development and quest for excellence. We thank Dr. Jacqueline Ramke, University of Auckland for comments on an earlier draft of this editorial. Joy Harewood is the inaugural Director of Diversity, Equity, Inclusion and Belonging at the SUNY College of Optometry and an Associate Clinical Professor. She completed her optometry degree at UC Berkeley School of Optometry, is a Fellow of the American Academy of Optometry and a Diplomate in the American Board of Optometry. She has spent her career in hospital-based care, working with medically underserved populations, and is passionate about the promotion of diversity and inclusion in optometry. Mark Rosenfield is the Editor-in-Chief of Ophthalmic and Physiological Optics. He is a Professor at the SUNY College of Optometry in New York City. Professor Rosenfield received both his optometry degree and his Ph.D. from Aston University. He holds a research diplomate in Binocular Vision, Perception and Pediatrics from the American Academy of Optometry, and has published extensively in the areas of digital eye strain, refractive error and binocular vision.