Race & Research: The Jury Is Still Out

There is a lot of noise to sort through when trying to understand the value of collecting/assessing race in research.

We want to point out that using race as a factor in health concerns is particularly sticky. Why? Because race is a social construct based on power structures, external appearances, and communities. The way we include or exclude race in discussion (and research!) can be harmful if we aren't aware of our underlying assumptions.

Why are racial differences used in health data?

We'll answer that back with a question: Is race being used as an “explanation" for a condition?

As in, “black people are more likely to have X disease,” which insidiously suggests that black people are somehow - as a monolith - biologically primed for disease (spoiler alert: that is a harmful myth).

It might seem evident that race isn't a cause. Putting race into a questionnaire or intake form would only do us good, right?

In the case of kidney function tests, this score unfairly and inaccurately places black people at the end of the list for treatment. The same happens for lung function tests in some hospitals and the treatment of black patients for pain. Having race on the intake form may not always help. If anything, it worsens the already inequitable access to care. More data is not always better for us when it’s soaked in bias.

This hands-off “the calculator told me" approach perpetuates the problem of putting races in risk categories instead of questioning the systems that keep certain factors in place.

But doesn't the data help to identify if racialized women are ignored?

It may seem that identifying gender and races and their risks of disease is an equitable approach. We are not invalidating that segments of people with similar health concerns can lead to earlier diagnosis, better care, acknowledging suffering, and offering medical solutions.

The problem is when decision-makers and physicians skip the details and behave as if race is the cause of the disease. Identifying race-differentiated disease is not a victory; it is a call to do better so that the underlying causes of disease are not so disproportionately weighted on our black and brown communities.

Medicalizing a socio-political problem through data is a major issue that we want to explicitly call out and address.

These are not skin color or biological realities. These are systemic race issues in healthcare.

Black women are 3-4 times more likely to die in childbirth, and those who survive are less likely to have care afterward, leading to long-term health issues.
Black women are 75% less likely to seek care for infertility.
60% of Black women aged 35 and up suffer from fibroids. Still, NIH annual funding allocates greater funding to diseases that affect far fewer black women.
Black people are 22% less likely to receive pain medication.
Black women are more likely to be ignored for their symptoms and receive poor care.

The list continues. We know these statistics because data has been collected on race, and we need to keep collecting the data to keep the evidence flowing. But it still isn't enough.

We feel the need to say this louder so that all of us can recognize if the data is feeding racist beliefs and guidelines: Correlation does not equal causation.

The effect of weathering through a system designed to eradicate your value, has a true biological impact. This endurance stress affects women, particularly black women, more than any other demographic on the planet. We need to create pathways for healing, rest, and recovery from the physiological reality of chronic weathering and not lump those who have endured into a “high-risk” category.

We can do better.

Why does hey freya collect race (and other non-health data too)?

We collect race, ethnicity, sexual orientation, and gender identity so that we can do better. We don't claim to craft your personalized solutions through your “demographic risk factors”. Your biological reality (your test results) and all the lifestyle factors we account for (your Lifestyle Assessment) reflect the real you, and we believe that will serve you better. We collect race data transparently to ensure you and the ways you identify in the world are accounted for. So that the data we collect can identify disparities, not excuse them away.

Our data is a tool for advocacy, not complacency.

These organizations are doing the work in naming the health impact of race and calling out the need to stop demanding “resilience” from the communities that need the most care.

Sources:

Disparities in healthcare for black women

Race Neutral eGFR

Reckoning with Race in Kidney Disease

Race and eGFR

Black maternal mortality

Structural racism and Maternal Health

Fertility care seeking in black women

Race Bias against black patients

Perception of pain on black faces

Black race affects offering of pain treatment

The racial inequities in medicine, born out of slavery