A Black Doctor Exposes How Biased Science Puts Lives at Risk – and What Must Change – Men’s Health

Report on Health Inequalities and the Imperative for Inclusive Genetic Research

A Framework for Achieving Sustainable Development Goals 3 and 10

Systemic health inequalities, rooted in a lack of diversity in medical research, present a significant barrier to achieving global health and equality targets. This report analyses the impact of underrepresentation in genomic studies on health outcomes, particularly for Black communities, and outlines strategic interventions necessary to advance Sustainable Development Goal 3 (Good Health and Well-being) and Sustainable Development Goal 10 (Reduced Inequalities).

The Challenge of Health Disparities: A Barrier to SDG 3 and SDG 10

Defining Health Inequalities

Health inequalities are defined as avoidable, systemic differences in health and healthcare access between societal groups. Addressing these disparities is fundamental to the principles of SDG 3, which aims to ensure healthy lives for all, and SDG 10, which calls for the reduction of inequality within and among countries. The avoidable nature of these gaps means that targeted action can produce more equitable outcomes.

Observed Disparities in Health Outcomes

Empirical evidence highlights significant health disparities that undermine the goal of universal well-being. These disparities manifest across various conditions:

• Infectious Diseases: Government reviews during the COVID-19 pandemic revealed higher mortality rates for Black and Asian ethnic groups in the UK compared to White ethnic groups.
• Non-Communicable Diseases: Chronic conditions such as diabetes, heart disease, and kidney disease disproportionately affect certain ethnic groups.
• Oncology: Studies indicate that Black men are twice as likely to be diagnosed with prostate cancer and are often diagnosed at a later stage, limiting effective treatment options and contributing to unequal outcomes.

Root Cause Analysis: The Genetic Research and Data Gap

Underrepresentation in Genomic Databases

Clinical guidelines that inform medical diagnoses and treatments are built upon research data. However, major genomic databases, such as the UK BioBank, lack diversity, which compromises the universal applicability of their findings. This institutional bias obstructs progress toward SDG 16 (Peace, Justice and Strong Institutions) by failing to create effective and inclusive systems.

• 86.3% of genomic studies are based on data from individuals of European ancestry.
• Only 1.1% of genomic studies are based on data from individuals of African ancestry.

This significant imbalance means that diagnostic tools and therapeutic strategies may not be optimised for a large portion of the global population, directly hindering the objective of universal health coverage outlined in SDG Target 3.8.

Clinical Implications of Non-Inclusive Research

Case Study 1: Type 2 Diabetes and G6PD Deficiency

A genetic variation leading to G6PD deficiency is carried by approximately 1 in 7 Black men. This variation interferes with the standard HbA1c test used to diagnose and monitor type 2 diabetes, causing blood sugar levels to appear artificially low. Consequently, individuals may remain undiagnosed for years while the disease progresses, increasing the risk of severe complications. This failure in diagnostic accuracy represents a critical gap in providing equitable healthcare as mandated by SDG 3.

Case Study 2: Chronic Kidney Disease and the APOL1 Gene

A variation in the APOL1 gene, common in individuals of African ancestry, significantly increases the risk of chronic kidney disease and end-stage kidney failure. As symptoms often do not appear until the disease is advanced, the lack of genetically informed screening protocols for at-risk populations perpetuates health inequality.

Case Study 3: Pharmacogenomics and Drug Efficacy

The cytochrome P450 enzyme family metabolises approximately 90% of prescribed medications. Unique genetic variations in these enzymes are more common in people of African descent, which can alter drug metabolism, leading to a higher risk of adverse reactions or reduced treatment effectiveness. This disparity undermines the goal of providing safe, effective, and affordable medicines for all.

Strategic Interventions and Recommendations

The Black Health Legacy Initiative: A Model for SDG 17 (Partnerships for the Goals)

The Black Health Legacy study, a collaboration between Queen Mary University of London, the University of Exeter, and community stakeholders, exemplifies the partnership model of SDG 17. The initiative aims to close the genetic research gap by focusing on conditions that disproportionately affect Black communities while comparing data across diverse ancestries. The goal is to build a more inclusive evidence base for better diagnosis and treatment for everyone. Key stakeholders in this initiative include:

• Dr Veline Lesparence: Co-Lead of Black Health Legacy and an academic GP focused on making healthcare more inclusive.
• Professor Sarah Finer: Co-Lead and a Professor of Clinical Diabetes advancing the understanding of how diabetes affects different populations.
• Bernice Appiah: A research facilitator connecting underrepresented communities with research opportunities.
• Sasha Henriques: A principal genetic counsellor researching structural inequalities in genomic research.
• Dr Drews Adade: A physician committed to closing the genetic gap through research and community engagement.

Recommendations for Systemic Change

Achieving health equity requires a comprehensive, system-wide approach. The following actions are recommended:

1. Promote Inclusive Research Design: Mandate that clinical and genomic research includes diverse and representative participant populations to ensure findings are universally applicable, aligning with the principles of SDG 10.
2. Foster Community Engagement and Trust: Build partnerships with underrepresented communities to co-design research studies, ensuring relevance and encouraging participation. This supports the creation of inclusive institutions as envisioned in SDG 16.
3. Develop and Validate Diverse Diagnostic Tools: Invest in the development of diagnostic technologies and clinical guidelines that account for genetic variation across different ancestral backgrounds.
4. Ensure Equitable Access to Personalised Medicine: Guarantee that the benefits of personalised medicine, which relies on genetic data, are accessible to all populations, preventing it from becoming a privilege that widens health disparities.

Conclusion: A Call to Action for Universal Health and Reduced Inequalities

Closing the genetic research gap is a fundamental requirement for achieving global health equity. The current imbalance in research data perpetuates the very inequalities that SDG 3 and SDG 10 seek to eliminate. By building inclusive research frameworks, fostering collaborative partnerships, and developing tools that reflect human diversity, the global community can move closer to a future where precision medicine and equitable healthcare are a standard for all, not a privilege for a few.

SDGs, Targets, and Indicators Analysis

1. Which SDGs are addressed or connected to the issues highlighted in the article?

• SDG 3: Good Health and Well-being: The article’s central theme is health inequality, directly addressing the goal of ensuring healthy lives and promoting well-being for all. It highlights disparities in health outcomes for conditions like COVID-19, diabetes, kidney disease, and prostate cancer among different ethnic groups, particularly Black men.
• SDG 10: Reduced Inequalities: The article focuses on reducing inequalities within a country (the UK). It explicitly defines health inequalities as “systemic and avoidable” differences in health and access to care between groups in society. The entire discussion is framed around the racial and ethnic disparities in healthcare outcomes, which is a core concern of SDG 10.
• SDG 9: Industry, Innovation, and Infrastructure: The article identifies a major gap in scientific research and innovation as a root cause of health inequality. It points to the lack of diversity in genomic data and biobanks, and calls for enhancing scientific research to be more inclusive. Initiatives like the “Black Health Legacy” study are presented as innovative solutions to this problem.
• SDG 17: Partnerships for the Goals: The article highlights the collaborative effort required to address these complex issues. The “Black Health Legacy” study is presented as a partnership between universities (Queen Mary University of London and the University of Exeter) and a diverse group of professionals (doctors, professors, genetic counsellors) working together to achieve the goal of health equity.

2. What specific targets under those SDGs can be identified based on the article’s content?

1. SDG 3: Good Health and Well-being
   • Target 3.4: By 2030, reduce by one-third premature mortality from non-communicable diseases through prevention and treatment. The article discusses how disparities in diagnosis and treatment for non-communicable diseases like “diabetes, kidney disease, and heart disease” lead to worse outcomes for Black men. The delayed diagnosis of diabetes due to G6PD deficiency, for example, increases the “risk of serious complications, like eye damage and kidney disease,” contributing to preventable morbidity and premature mortality.
   • Target 3.8: Achieve universal health coverage, including access to quality essential health-care services. The article argues that even within a system of universal coverage like the UK’s NHS, the *quality* of care is not equal. It states that diagnostic tools “built on non-diverse data can miss the mark, failing to detect disease in people whose biology wasn’t considered,” which constitutes a failure to provide quality essential healthcare services for all.
2. SDG 10: Reduced Inequalities
   • Target 10.2: By 2030, empower and promote the social, economic and political inclusion of all, irrespective of race, ethnicity, or other status. The article’s mission is to achieve health inclusion for Black communities who are currently excluded from the benefits of genomic research. The call to “bring everyone to the table” and for community members to “take part in clinical trials, fill out health surveys, join focus groups” is a direct effort to promote inclusion.
   • Target 10.3: Ensure equal opportunity and reduce inequalities of outcome. The article is built around demonstrating “inequalities of outcome,” citing that “COVID-19 death rates in the UK were higher for Black and Asian ethnic groups” and “Black men are twice as likely to get prostate cancer and more likely to be diagnosed later.” The proposed solution—making research more inclusive—is an action aimed at reducing these unequal outcomes.
3. SDG 9: Industry, Innovation, and Infrastructure
   • Target 9.5: Enhance scientific research and encourage innovation. The article critiques the current state of scientific research, where “86.3% of genomic studies are based on European ancestry,” and calls for a “full system reset” to enhance it. The Black Health Legacy study is an example of an innovative research project designed to upgrade scientific capabilities to address health disparities.

3. Are there any indicators mentioned or implied in the article that can be used to measure progress towards the identified targets?

1. Disaggregated Health Outcome Data: The article provides specific statistics that can be used as indicators to track inequalities.
   • Mortality Rates by Ethnicity: The statement that “COVID-19 death rates in the UK were higher for Black and Asian ethnic groups when compared to White ethnic groups” serves as a direct indicator of health outcome inequality.
   • Disease Incidence and Diagnosis Rates by Ethnicity: The statistic that “Black men are twice as likely to get prostate cancer and more likely to be diagnosed later” is a measurable indicator of disparity in both incidence and healthcare access/effectiveness.
2. Representation in Scientific Research: The article provides a key quantitative indicator to measure the root cause of the problem.
   • Proportion of Genomic Data by Ancestry: The figure that “86.3% of genomic studies are based on European ancestry compared to just 1.1% from African ancestry” is a critical baseline indicator. Progress towards health equity can be measured by tracking the increase in the percentage of data from African and other underrepresented ancestries in biobanks and genomic studies.
3. Prevalence of Genetic Variations by Ethnicity: The article uses genetic data to highlight biological differences that current healthcare practices overlook.
   • Frequency of Specific Genetic Markers: The data that “1 in 7 Black men carry a genetic variation that leads to a condition called G6PD deficiency… It’s also found in 1 in 64 Asian men and just 1 in 10,000 White men” is an indicator of how population-specific genetic knowledge is crucial for equitable diagnostics and treatment.

4. Summary Table of SDGs, Targets, and Indicators

Source: menshealth.com