Why DEI matters in Huntington’s disease research

I got home from work the other day and caught a glimpse of a relic on our television set: a 5 p.m. local newscast. Stranger still, my wife, Jill, was actually leaning forward and watching it.

On the newscast, some government officials were criticizing diversity, equity, and inclusion, or DEI, as if it were a mere slogan and a distraction. Jill, who is living with Huntington’s disease (HD), shook her head. DEI isn’t a culture war ornament; it’s a data strategy and a patient-safety tool. Getting rid of it doesn’t help anyone; it just throws away information that could save lives.

HD is hereditary and progressive, affecting movement, cognition, and mood. Early signs include chorea, coordination problems, and cognitive and mood changes. But here’s the truth that HD families learn early: Huntington’s doesn’t look identical in every person. That variability is why DEI matters.

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Bigger, more representative datasets allow researchers to see real patterns instead of averages that hide outliers. Diverse teams frame better questions. Diverse participants produce results that actually apply to the people who will use treatments.

From day to day, HD care can feel like a game of whack‑a‑mole. Symptoms shift, and plans are adjusted. That’s heterogeneity in action. The scientific answer to heterogeneity is not to wish it away; it’s to measure it. Larger sample sizes increase statistical power so that clinical trials can detect real effects and safety signals rather than mistaking them for noise.

Broader enrollment across race, ethnicity, age, geography, income, language, and comorbidities reveal who benefits, and at what dose, and who faces elevated risk. Strip DEI out, and studies stay small, narrow, and less reliable — exactly when families need clarity.

This is why calling DEI bad misses the point. DEI widens the lens. It reduces blind spots. It makes results more generalizable. It helps trials recruit people who historically have been excluded by cost, distance, language, or distrust.

Removing DEI doesn’t create neutrality; it reinforces the old biases that made medicine less safe and less effective for many communities. If a therapy only works in the population that’s easiest to recruit, it isn’t ready for the real world. Think about the stakes for Huntington’s.

With inclusive design, trial sites choose endpoints that reflect lived disease, not just idealized cohorts. Biomarkers are validated faster because they’re tested across different bodies and backgrounds. Adaptive trials identify subgroup responses earlier, so investigators can double down on what works and toss out what doesn’t.

That’s faster progress, fewer dead ends, and better use of precious participant time. Without DEI, the opposite unfolds: missed signals, preventable adverse events, and treatments that look good on paper but underperform in clinics.

DEI also protects scarce resources. Underpowered, homogeneous studies are more likely to produce ambiguous results that must be repeated — slowing timelines and burning money. Stronger, broader datasets shorten the distance between question and answer.

For a family watching HD move through generations, that difference is everything. It’s the gap between guessing and knowing, between almost helpful and truly effective.

Stronger science and safer care

Jill’s takeaway after the broadcast was blunt: DEI is being politicized, but families like ours can’t afford politics. We need data — enough of it, and the right kind. We need research teams that reflect the world HD lives in. We need trials that welcome participants who have historically been left out, not because it looks good, but because it makes the science stronger and the care safer.

So here’s the invitation: When DEI is framed as a problem, answer with outcomes.

We must ask ourselves whether we want medicines that work for everyone or for only the few who fit a narrow study profile. We must ask whether we want to spend years redoing trials that were too small and too alike, or get it right the first time with robust data. And then we must ask whether we want to keep losing families to gaps we can close.

DEI may be touted as a bad thing, but it’s not. It is how research becomes accurate, how treatments become fair, and how hope becomes real. Taking it away doesn’t help anyone — especially those with chronic, terminal, or rare genetic diseases.

I ask myself, “How could anything that could possibly spare my wife the indignity and suffering that HD brings — and, one day, our daughter, who may follow in her mother’s footsteps — be bad?” I ask the same of everyone reading this.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.