Why Does It Feel Like Some People Get Left Out of Science?
You’ve probably seen those clinical trials on the news — the ones testing a new drug for diabetes, or a vaccine for malaria, or a therapy for Alzheimer’s. The ads look hopeful, the science seems solid… but then you ask: who’s actually in those studies?
More often than not, the answer is: not everyone. Not people over 75. Not pregnant women. Now, not folks with two or more chronic conditions. Not people who don’t speak English well — or at all. And not people who can’t afford to miss work for clinic visits. Not people who’ve been burned by medicine before No workaround needed..
And here’s the uncomfortable truth: that’s not just a logistical headache. It’s a justice issue. A real one.
When we talk about the ethical principle of justice in research — especially in human subjects research — it’s not just about fairness in the abstract. It’s about who bears the burden of risk, who gets access to potential benefits, and who’s left out when the science moves forward.
Some disagree here. Fair enough.
This isn’t a “nice to have” add-on. It’s core to doing research the right way. And if you’ve ever wondered why ethics boards (like IRBs) ask so many pointed questions about recruitment strategies or eligibility criteria — now you know The details matter here..
What Is Justice in Research Ethics?
Justice, in the Belmont Report — the foundational document guiding research ethics in the U.S. — is one of three core principles (alongside respect for persons and beneficence). It’s not about treating everyone identically. It’s about fairness in the distribution of the benefits and burdens of research.
That means two things:
- Fair selection of subjects — no exploiting vulnerable populations, no overburdening the disadvantaged while excluding the privileged.
- Equitable distribution of research benefits — so that advances in knowledge, diagnostics, or treatments reach the people who need them most — not just those who already have the easiest access to care.
Who Counts as Vulnerable?
Some groups are especially at risk of being used — or excluded — in ways that violate justice:
- Children — can’t consent, so they need extra protections. But excluding them entirely means kids miss out on age-appropriate treatments.
- Pregnant people — often left out of trials, even though many medications are used during pregnancy. That leaves clinicians guessing — and patients at risk.
- Prisoners — historically exploited (remember the Tuskegee Syphilis Study? Or HIV experiments in prisons?). Today, they’re still overrepresented in some studies, but underrepresented in others — depending on who’s doing the recruiting.
- People with cognitive impairments — may need surrogate consent, but that doesn’t mean their autonomy or right to participate should be dismissed.
- Low-income or marginalized communities — often excluded due to logistical barriers (transportation, time off work, language), or because researchers assume they won’t comply. That assumption is itself a form of bias.
It’s Not Just About Who’s In — It’s About Who’s Out
Exclusion isn’t always obvious. Sometimes it’s built into eligibility criteria: “Must be able to complete 6-minute walk test” — great, unless you have severe COPD. “Must have stable housing” — excludes people experiencing homelessness, even if they’d benefit most from the intervention.
That’s not just inconvenient — it’s unjust. And it means the science we end up with doesn’t reflect the real world.
Why It Matters: When Justice Fails, Everyone Pays
You might think: “Well, if they’re excluding people for safety or protocol reasons, isn’t that okay?In real terms, ” Sometimes — yes. But often, it’s not about science. It’s about convenience, bias, or outdated assumptions And that's really what it comes down to..
Here’s what happens when justice is ignored:
The Treatment Gap Gets Wider
Take diabetes meds: many were tested primarily in white, middle-aged men. Then they hit the market — and doctors prescribed them to everyone. Think about it: the result? But we later learned that some drugs work differently in women, or in older adults, or in people with kidney disease. Suboptimal dosing, unexpected side effects, or even harm.
It sounds simple, but the gap is usually here.
Or look at heart disease. For decades, symptoms and diagnostic criteria were based almost entirely on male patients. On top of that, women’s heart attacks were dismissed as “anxiety. Here's the thing — ” The outcome? Higher mortality in women under 50.
Trust Erodes — Especially in Marginalized Communities
When a community sees itself consistently excluded — or worse, used as test subjects without benefit — trust evaporates. That’s not irrational. It’s rational and justified. And once trust is gone, recruitment gets harder. Participation drops. Science stalls The details matter here..
The legacy of Tuskegee still echoes today — not because people are “anti-science,” but because they remember who got left behind Easy to understand, harder to ignore..
We Get Less Reliable Science
If your trial only includes people who are young, healthy, and financially stable, how well will it predict what happens in the real world? Not well. At all But it adds up..
Real-world patients have comorbidities. They take other meds. Which means they live in environments that affect their health — from air quality to food access. If your study doesn’t reflect that, your results are… limited.
How Justice Shapes Real Research Decisions
Let’s get practical. How does justice actually play out in a study?
### Who Gets to Decide Eligibility Criteria?
Eligibility criteria aren’t neutral. They’re choices — and those choices reflect values (even if researchers don’t realize it) And that's really what it comes down to..
Ask yourself:
- Is this criterion necessary for safety?
In real terms, - Or is it just convenient? So naturally, - Does it exclude people who would benefit more from the intervention? - Could the same goal be achieved with less restrictive criteria?
For example: instead of excluding all people over 75, maybe you stratify by age or adjust dosing. Instead of excluding people with depression, maybe you include them — and measure outcomes with depression as a factor.
### How Are Participants Recruited?
If your recruitment strategy is: “flyers in the hospital lobby,” you’re already missing people who don’t go to that hospital — or who can’t read the flyers. Or who don’t trust hospitals.
Better approaches?
Still, - Offer transportation help, childcare, or flexible hours. - Partner with community clinics, churches, shelters, food banks.
On the flip side, - Use plain-language materials in multiple languages. - Hire community health workers — people who share language and culture with the target population Nothing fancy..
This isn’t “extra work.” It’s part of doing justice.
### Who Owns the Data — and Who Benefits?
Justice also means thinking beyond enrollment. But who owns the data? So who profits? Who gets access to the final treatment — and when?
If a trial is run in a low-income country but the resulting drug is priced beyond reach there, that’s not justice. It’s extraction Easy to understand, harder to ignore..
Common Mistakes (That Still Happen Every Day)
Assuming “Representative” Means “Convenient”
Recruiting from one urban academic center? That’s not representative. It’s just easy.
Using “Safety” as a Catch-All Excuse
“Too complex to manage” isn’t a safety issue. “High risk of harm” is. Don’t hide behind vague safety concerns to avoid inclusion Still holds up..
Ignoring Social Determinants
You can’t understand a patient’s health without understanding their life — their job, their housing, their stress, their access to food. Excluding people because they’re poor, or homeless, or undocumented — that’s not science. It’s bias Practical, not theoretical..
Thinking “Inclusion” Is Enough
Just adding people to a trial isn’t justice if you don’t support them through it. On the flip side, if people drop out because they can’t afford to come back — you didn’t include them. You just invited them and walked away.
Practical Tips That Actually Work
Start with Community Input — Early and Often
Don’t wait until IRB review. Still, - What would make you want to join — or stay in — a trial? And talk to community leaders, patient advocates, and people who’ve lived the experience before you design the protocol. Ask:
- What matters most to you in this research?
- What has kept you out in the past?
Their answers might surprise you Nothing fancy..
Build Flexibility into Your Design
- Allow home visits or telehealth follow-ups.
- Accept lab work done at local clinics.
- Offer compensation that reflects time and travel —
—not just a parking voucher that barely covers gas. Worth adding: think about what participation actually costs someone: lost wages, transportation, time away from family. Fair compensation isn't a bonus; it's an acknowledgment of their contribution.
Design for Retention, Not Just Recruitment
Inclusion means nothing if participants can't stay. Build retention into your budget from day one:
- Follow-up reminders via text, call, or whatever method works for your population
- Stipends that make continued participation feasible
- Flexibility for work schedules, caregiving responsibilities, and unexpected life events
Report Results Back to Communities
This step is shockingly often forgotten. So host town halls, create plain-language summaries, share what happens next. You collected data from a community — the least you can do is return to tell them what you found. Research shouldn't be a one-way street That alone is useful..
Train Your Team on Cultural Humility
Not cultural competence — because that implies you've "mastered" understanding other cultures. Even so, cultural humility is ongoing. It means acknowledging what you don't know, asking rather than assuming, and being willing to be corrected The details matter here..
What This Actually Requires
Let's be honest: none of this is easy. It takes more time, more money, and more patience. It requires building relationships before you need anything from people. It means giving up some control.
But here's the thing — the research is better for it. When you retain participants well, your data is more complete. Consider this: when you include diverse participants, you get results that actually apply to the people who will use the treatment. When you partner with communities, you build trust that makes future research possible.
Justice isn't just the right thing to do. It's good science.
A Final Thought
Every exclusion is a choice. Every barrier is a decision. When we say "we couldn't include those people," what we often mean is "we chose not to.
We can choose differently. We can choose to design research that reaches everyone it should — not just everyone who happens to walk through the door of an academic medical center. We can choose to see participants as partners, not data points. We can choose to produce knowledge that actually serves the people it claims to help.
The question isn't whether inclusive research is possible. The question is whether we're willing to do the work.
And that choice — that is up to us Easy to understand, harder to ignore..
