Excluded and left behind: Racial discrimination and structural inequalities in the right to health

Abstract

Racial discrimination is a structural social determinant of health and a separate health risk leading to preventable negative health inequities. This column introduces the recently adopted (2024) general recommendation by the Committee on the Elimination of Racial Discrimination which focuses on racial discrimination and structural inequalities in the enjoyment of the right to health. This column provides insight into the comprehensive and intersectional approach of the Committee in clarifying the right to equality and freedom from racial discrimination in the enjoyment of the right to health. Recalling that it does not suffice to prohibit and refrain from racial discrimination under the International Convention on the Elimination of All Forms of Racial Discrimination, the column briefly explains what measures must be taken to ensure that equality in the enjoyment of the right to health does not remain an empty promise for millions of people around the globe.

1. INTRODUCTION

Racial discrimination is one of the structural determinants of health, producing social stratification of populations in access to resources and opportunities, and increasing exposure to health-harming conditions. ² Structural inequalities in housing, education, employment, healthcare and safe food are only a few of the conditions increasing poor health outcomes, such as levels of communicable and non-communicable diseases. ³ In 2022, maternal mortality rates for women of African descent were three times higher than for white women in the United Kingdom. ⁴ While average life expectancy has overall increased during the past several decades, ⁵ the life expectancy for the Aboriginal and Torres Strait Islander population is 8.6 years less for men and 7.8 years less for women, when compared with the non-Indigenous population. ⁶ Racial discrimination triggers the body's stress response, leading to both immediate and long-term biological changes. ⁷ This can include epigenetic modifications, which means that the negative health impacts of discrimination experienced by one generation could be passed down to the next. ⁸ Repeated racist microaggressions have negative health consequences on some people of African descent, in particular in the form of poor overall mental health. ⁹ These are only a few examples of negative health outcomes linked to racial discrimination.

The COVID-19 pandemic starkly revealed to a wider audience how racial discrimination and structural inequalities contribute to higher rates of disease and mortality. ¹⁰ Racialised communities faced unequal opportunities to be protected due to a combination of factors: higher poverty levels, challenging living and working conditions, and limited access to essential social determinants of health, such as clean water. These barriers made it difficult to adhere to public health measures like handwashing and physical distancing. A greater prevalence of preexisting health conditions also increased their vulnerability to severe illness. Additionally, disproportionate incarceration or “isolation” in other overcrowded spaces heightened the risk of infection, while increased stress and anxiety further amplified the likelihood of serious health complications.

The UN Committee on the Elimination of Racial Discrimination (CERD/Committee) addressed the urgent issues of the pandemic under its Early Warning and Urgent Actions procedure, ¹¹ recalling States’ obligation to actively address structural inequalities while ensuring compliance of measures addressing the COVID-19 pandemic with the prohibition of racial discrimination. ¹² Later, with more concrete data revealing that, as of April 2022, only 15.21 per cent of the population in low-income countries had received even one vaccine dose, CERD called on States parties to combat the COVID-19 pandemic guided by the principle of international solidarity through international assistance and cooperation, including by supporting the proposal of a comprehensive temporary waiver on the provisions of the Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS). ¹³

2. DRAWING ON THE PAST, BUILDING A HEALTHIER ANTI-RACIST FUTURE

The pandemic's devasting effect on racial and ethnic minority groups was a catalyst for increasing awareness among health providers regarding the need to challenge and dismantle colonial legacies and power imbalances within health systems and practices worldwide. ¹⁴ It was also a pivotal moment for the CERD to use the tool of general recommendations and provide guidance on equality and anti-discrimination measures in the field of health, building on lessons learned. ¹⁵ While the reception and persuasiveness of treaty bodies’ general recommendations/comments by States parties have varied, ¹⁶ their contribution to the development of international human rights law through promoting a ‘common language’ between all stakeholders should not be overlooked. ¹⁷

A number of steps were taken by the CERD to increase legitimacy and transparency during the drafting process. The general recommendation was initiated by holding a thematic discussion with States parties, the WHO, other international and regional agencies, health professionals and civil society organisations. ¹⁸ This process informed the first draft of the general recommendation, along with CERD's practice, in particular under the reporting procedure. The Committee has only examined one individual complaint on the right to health on mandatory HIV/AIDS testing limited to non-citizens, ¹⁹ while a wide range of issues of concern have been discussed in the context of dialogues with States parties. This showcases once more that racial discrimination remains severely underreported and the individual complaint procedure is still underused. At a later stage, for the first time in the Committee's history, regional consultations were held with stakeholders in Africa, Asia-Pacific, Latin America, Europe, North America and the Caribbean, bringing communities’ experiences and knowledge closer to Geneva.

The Committee adopted general recommendation No. 37 (GR No. 37) in August 2024. ²⁰ Adopting an informative model, the general recommendation provides examples on how direct and indirect racial discrimination occur by both acts and omissions, and how implicit racial bias, including algorithmic, may perpetuate structural inequalities. ²¹ It guides States parties in taking concrete measures to eliminate racial discrimination and to ensure equality in the enjoyment of the right to health. GR No. 37 reflects the CERD's broader efforts to address racial discrimination within an intersectional framework, ²² enabling States parties to tackle the synergistic effect of racial discrimination with other socio-economic and socio-political conditions, such as gender inequality. ²³ In a non-exhaustive list, the Committee recalls that that it is central to addressing racial discrimination and inequalities intersecting with age, religion and belief, health status, disability, migratory status, socioeconomic status, sex, sexual orientation, gender identity, gender expression or sex characteristics.

3. A HOLISTIC APPROACH TO AN INCLUSIVE RIGHT

Article 5 (e)(iv) ICERD prohibits racial discrimination and guarantees the right to equality in the enjoyment of the right to ‘public health, medical care, social security and social services.’ Several submissions during the consultations process advocated for a clear statement on the right to health encompassing mental health, underscoring the effect of racial discrimination on mental health and the penury of adequate responses. ²⁴ Taking into consideration that most States parties to the Convention have ratified the International Covenant on Economic, Social and Cultural Rights (ICESCR) and are members of the WHO, ²⁵ CERD reaffirms health as ‘the highest attainable standard of physical and mental health’. ²⁶ Aligned with the 2030 Agenda for Sustainable Development and the One Health approach, ²⁷ the Committee is increasingly adopting an ecocentric perspective, enhancing the treaty's effectiveness in relation to Indigenous Peoples’ recognition and exercise of the right to health, inextricably linked with their land-informed knowledge of well-being. ²⁸

Supported by the wording of article 5 (e)(iv), the Committee adhered to the interpretation of the right to health as an inclusive right encompassing both freedoms and entitlements. ²⁹ ‘Public health’ in article 5 (e)(iv) focuses on prevention and control of disease and injury, the improvement of determinants of health, and the quality of interaction between authorities, health-related professionals and the population, while ‘medical care’ integrates the right to timely and appropriate health goods and services and includes palliative, curative and rehabilitative healthcare. ³⁰ This interpretation enables the Committee to expand the Convention's full potential across three key dimensions in health: prevention, autonomy and healthcare.

Prevention

The Committee focused on key determinants for preventing overexposure to health-harming conditions. ³¹ Inadequate maintenance of water and sanitation infrastructure contribute to health risks such as waterborne diseases that are transmitted by ingestion of contaminated water. ³² The right to safe food of racialised communities is disproportionately affected due to limited economic resources, discriminatory practices in the food industry and other barriers to accessing healthy foods. They face residential segregation, are pushed into overcrowded housing, and are subjected to forced evictions. Vulnerability and poverty impact their diets and health, contributing to higher rates of diet-related diseases and nutritional deficiencies. Racialised communities are disproportionately subjected to climate-induced health hazards, owing to their geographical location or socioeconomic situation and cultural traditions. Migrants, refugees, asylum-seekers, and stateless persons are exposed to health risks caused by poor living conditions, document confiscation by abusive employers, harmful work environments, and exclusion from social security. ³³ Undocumented migrants are reported to the police when they were found to be unable to pay health-care bills. ³⁴ Racialised communities are disproportionately incarcerated, facing inadequate healthcare, violence, mental health challenges, and barriers to reintegration, worsening health disparities.

Autonomy

GR No. 37 recognises the right to bodily autonomy and physical integrity as essential component requiring full adherence to the principles of dignity, autonomy, and self-determination. ³⁵ Racial bias can result in the overdiagnosis of mental health issues and excessive use of coercive practices, such as involuntary admission, treatment, seclusion, and restraint with a disproportionate impact on the person, their family and the wider community. ³⁶ By way of example, in 2021–2022, use of community treatment orders was over 11 times higher for persons of African descent in the United Kingdom than the use for the White group. ³⁷ Moreover, forced sterilisation has been used as a tool in population control policies targeting Indigenous women, women of African descent, Roma women, and other ethnic or caste groups, and women with intellectual or psychosocial disabilities who are often denied legal capacity and the right to consent. ³⁸ This practice violates multiple rights, including reproductive autonomy, access to information, personal integrity, privacy, and freedom from racial and gender-based violence and discrimination. Additionally, the criminalisation of abortion in all circumstances constitutes an indirect form of gender-based discrimination intersecting with racial discrimination as it has a greater impact on indigenous women and women of African descent, particularly those with low income due to barriers in accessing modern contraceptives and safe abortion services. ³⁹ Banning abortion disproportionately affects these groups and violates the principle of non-retrogression. ⁴⁰

Healthcare

GR No. 37 clarifies the content of the right to an inclusive health system of public health, the right to equal and unhindered access to culturally appropriate, gender-sensitive and context-responsive quality health facilities, goods, services, the right to privacy and confidentiality and the right to participation. ⁴¹ In practice, racialised communities face major challenges in all essential elements of the right to health: ⁴²

Availability: Racial and ethnic minority groups are often underserved and do not have an adequate quantity of functioning health care facilities, services, goods and programmes within reasonable geographical reach. ⁴³ Available healthcare goods and services are not distributed to effectively target negative health outcomes induced by racial discrimination. Neglected tropical diseases, often related to racial inequalities and poverty within and among countries, are not economically attractive for pharmaceuticals and States fail to include them in their public health policies. ⁴⁴

Accessibility: Every person protected by ICERD has the right to unhindered access to healthcare, including physical, economic, informational, and legal accessibility. Physical accessibility is crucial for those in remote areas or vulnerable conditions, and healthcare services should be affordable, free at the point of care, and not result in financial hardship. Health information should be accessible, understandable, and actionable to allow individuals to participate in their healthcare effectively. Digital healthcare can enhance accessibility must be managed to prevent discrimination and the digital divide. ⁴⁵

Acceptability: Healthcare services must be culturally sensitive, respectful of the diversity of racial and ethnic minority groups and adapted to their linguistic and cultural characteristics. ⁴⁶ Stereotypes, colonial legacies, and bias against traditional knowledge should be actively countered to ensure culturally acceptable healthcare. High rates of maternal mortality and injuries of indigenous women who deliver at home are not unconnected to hostile health centres’ protocols. As an example, giving the opportunity to indigenous women to follow their tradition of giving birth in an upright position improves maternal health and saves lives. ⁴⁷ Racialised communities are often subjected to harassment and violence while accessing healthcare services. The Committee has received reports on practices of segregation and harassment within maternity hospitals against Roma women. ⁴⁸

Quality: Racial discrimination also affects the right to healthcare of good quality. ⁴⁹ Racialised communities are subject to institutional racial bias, stereotypes in medical training, and normalisation of social constructs in health practices, protocols and policies. ⁵⁰ Disease stereotyping is perpetuated by conflating race and ancestry, by using terms with racial connotations and by referring to differences in the prevalence of disease without historical or social context. ⁵¹ Racial bias permeates artificial intelligence through electronic health records fed to machine learning algorithms, which are being used increasingly in health systems. ⁵² Clinical algorithms reproduce structural inequalities by translating them into health indicators or by failing to assess the synergies among psychosocial, genetic and environmental factors. The absence of transparency hinders healthcare providers from making adjustments to these algorithms in practice. Under the historical legacy of slavery, women and men of African descent are considered physically stronger and able to endure more pain. ⁵³ Women belonging to racialised communities often wait longer before they have access to medicine, including during labour.

It is evident that without comprehensive and cross-sectoral interventions, States parties are destined to fall short in upholding the right to freedom from racial discrimination and in promoting equality in the enjoyment of the right to health with devastating effects for millions of people around the globe.

4. EQUALITY UNDER ICERD: NOT AN EMPTY COMMITMENT

States parties to ICERD have committed to a set of interrelated obligations mainly centred around article 2. Public authorities and institutions must refrain from discriminatory acts, laws, or policies; they must prevent and prohibit racial discrimination by individuals, groups, or private organisations; and they must actively address ongoing structural disparities and existing inequalities by taking positive measures, including special ones (affirmative action), to guarantee substantive equality. ⁵⁴ Article 2(1)(e) strongly encourages the involvement of ‘multiracial organisations’ as a proactive measure to break down barriers and reduce racial divisions. Reading the Convention as a whole and in a context-sensitive manner with abundant examples under the reporting procedure, ⁵⁵ GR No. 37 further clarifies that the right to equality in the enjoyment of the right to health includes measures to: i) recognise and remedy the effect of racial bias and stigmatisation in health (articles 2(1)(d) and 4), ⁵⁶ ii) redress of the disadvantage of protected individuals and groups (article 2(2)), iii) ensure active participation of underrepresented groups (article 2(1)(e)), ⁵⁷ iv) advance structural changes (article 2(1)). ⁵⁸

The obligation to respect the right to health without racial discrimination requires States to repeal and refrain from any act or omission, any law, policy, practice that directly or indirectly restricts or affects disproportionately the enjoyment of the right to health by racial and ethnic groups (article 2 (2)), such as placing in detention persons protected under the Convention without due regard to pre-existing health vulnerability. ⁵⁹ Authorities, including law enforcement officials and health-related authorities, must refrain from racial bias, stigmatisation and any act of discrimination which results in bodily harm, preventable morbidity and mortality, such as coercive treatments and discriminatory restrictions in the control of communicable and non-communicable diseases and mental health. ⁶⁰

States are required to take all necessary actions to protect the right by ensuring that no individual or group is denied or compromised in their right to health based on race, colour, descent, or national or ethnic origin. ⁶¹ Knowledge of the impact of racial discrimination on health triggers positive obligations to: i) prevent risks and implement protective measures, including with regard to business enterprises, private health providers and other relevant organisations, ii) monitor and ensure adherence to legal and operational standards, and iii) provide effective remedies in the event of violations.

The obligation to fulfil, requires States, both individually and through international assistance and cooperation, to implement suitable legislative, administrative, budgetary, judicial, and promotional measures to fully realise the right to equality and freedom from racial discrimination in the enjoyment of the right to health. ⁶² In particular, States should take measures to: i) ensure diverse representation in health research, decision-making processes, and the healthcare workforce, ii) facilitate participation, consultation, and empowerment of affected communities, iii) monitor, track and address racial disparities in health, and iv) develop and implement national health action plans.

Additionally, States must address prejudices and promote tolerance through educational, cultural, and informational measures as outlined in article 7 ICERD. This involves educating health providers, policymakers, and the public about addressing racial health disparities and ensuring equal access to healthcare for everyone.

Finally, States must provide effective remedies and reparations for any act of racial discrimination as stipulated in article 6. ⁶³ Apart from judicial remedies, CERD recommends the establishment of non-judicial independent accountability mechanisms designed in partnership with racial and ethnic minority groups. The Committee recommends that States parties provide structural measures alongside individual reparations and include community participation to ensure compliance and prevent future violations.

Finally, GR No. 37 acknowledges the importance of international cooperation and multilateral diplomacy for promoting equality and prohibiting racial discrimination in global health. ⁶⁴ States parties are encouraged, when engaging with international organisations or concluding international agreements, to introduce non-discrimination clauses to ensure equal health rights. International solidarity and a human rights-based development is the appropriate framework to combat global health inequities.

5. CONCLUSION

Deeply embedded racial biases and discrimination continue to pervade various institutions, laws, practices and facets of society, excluding and ‘leaving behind’ millions of people worldwide, while new global challenges risk further widening this divide. However, this is not irreversible. Adopted as an anti-racist and anti-colonial instrument, ICERD seeks to dismantle racial barriers, prevent and redress the harm caused by structural inequalities and prejudice. GR No. 37 offers a tool to advance these goals for a healthier and inclusive society, which is now more crucial to pursue than ever.