Research has the power to transform lives. It’s the driving force behind medical breakthroughs, public health improvements, and overall well-being. But here’s the thing: research can only be truly impactful if it includes everyone. Representation in research isn't just a matter of fairness; it's a scientific and ethical imperative.
Why Representation in Research Matters
We know that factors like race, ethnicity, and socioeconomic background shape our health in complex ways. They’re often interconnected with access to care, exposure to environmental risks, culture-specific health trends, and even how symptoms are recognized (or overlooked).
For example, according to the CDC, Black Americans are more likely to die from heart disease than white Americans. Understanding complex intersections of identity is essential for developing targeted interventions and achieving health equity. And let’s be clear: race and ethnicity aren’t just stand-ins for genetics. While some genetic variations are more common in certain populations, race and ethnicity often provide insight into how culture, lived experiences, and societal structures impact health awareness, decisions, and outcomes.
But representation doesn't stop at race and ethnicity. A truly comprehensive approach must also consider age, sex/gender, genomics and multiomic variables, environment/geography, diet, and other relevant factors. Each of these elements contributes to the unique tapestry of an individual's health, and leaving any of them out means we’re working with an incomplete picture.
The Rise of Precision Medicine—And Its Risks
The rise of precision medicine underscores the critical need for representation. It aims to tailor treatments and interventions to individual characteristics, maximizing effectiveness and minimizing side effects. However, this personalized approach is only possible if the research upon which it is based includes a broad spectrum of individuals.
Without robust representation, precision medicine risks exacerbating existing health disparities, benefiting only a select few while leaving others behind. Imagine trying to create a personalized cancer treatment based solely on data from one demographic group. The resulting treatment might be highly effective for that population but completely ineffective, or even harmful, for others.
History is rife with examples of where lack of representation in research led to less effective interventions, subpar treatments, and increased fatality in particular groups:
- Women/girls and ADHD: Most ADHD research in the last few decades has focused on boys and men. As a result, there is a large discrepancy in the ratio of males to females diagnosed with ADHD before adulthood. The evidence points, in part, to the lack of recognition of symptoms in females. As a result, girls and women tend to suffer from more debilitating symptoms and lasting mental health comorbidities.
- Black Americans and hypertension: Certain blood pressure medications were initially tested primarily on people of European ancestry. Over time, it was discovered that these treatments were less effective in Black Americans, who as previously stated, are more likely to die from heart disease.
- Transgender people and healthcare: Transgender people experience increased rates of mental health disorders, substance use disorders, sexual and physical violence, and sexually transmitted infections. In a recent study, 30% of transgender people experienced a form of healthcare discrimination and 20% did not seek healthcare due to fear of discrimination.
- Older adults and drug metabolism: Clinical trials often exclude older adults due to concerns about comorbidities and potential medical complications. However, this hinders our understanding of how age-related changes in metabolism affect drug safety and efficacy in older populations.
We Can’t Solve What We Don’t Measure
By not tracking variables that make us unique, we limit our ability to develop medicines and interventions that are safe, effective, and truly precise for everyone. This directly contradicts the fundamental mission of research: to improve population health and well-being.
Furthermore, recent reports, such as the one from FierceBiotech regarding the CDC, highlight the dangers of restricting the use of certain terms related to identity. Scrubbing phrasing related to LGBTQ+ health, for example, hinders our ability to understand the unique health challenges faced by these communities. This lack of specific data makes it impossible to develop targeted interventions and confront health disparities. How can we address the specific needs of a population if we aren’t even allowed to name them?
A Healthier America Starts With Inclusive Research
We cannot make America healthier by generalizing health research. If we want real solutions, we need research that truly reflects the entirety of our population. This means not only including representatives from all populations and engaging all communities with culturally competent communication, but also tracking relevant variables rigorously so that we can take effective, data-driven action to improve health outcomes for all. Only then can we unlock the full potential of research and build a healthier future for everyone.
Want to learn how Acclinate is putting representation into action? Schedule a meeting with our team.
