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 who don’t speak English well — or at all. Not pregnant women. Not people over 75. Which means not folks with two or more chronic conditions. Which means not people who can’t afford to miss work for clinic visits. Not people who’ve been burned by medicine before It's one of those things that adds up..
And here’s the uncomfortable truth: that’s not just a logistical headache. Consider this: it’s a justice issue. A real one The details matter here..
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 Worth knowing..
This isn’t a “nice to have” add-on. Plus, 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.
What Is Justice in Research Ethics?
Justice, in the Belmont Report — the foundational document guiding research ethics in the U.On the flip side, it’s not about treating everyone identically. — is one of three core principles (alongside respect for persons and beneficence). In practice, s. 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?And ” Sometimes — yes. But often, it’s not about science. It’s about convenience, bias, or outdated assumptions.
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. The result? But we later learned that some drugs work differently in women, or in older adults, or in people with kidney disease. Then they hit the market — and doctors prescribed them to everyone. Suboptimal dosing, unexpected side effects, or even harm.
Or look at heart disease. That said, for decades, symptoms and diagnostic criteria were based almost entirely on male patients. On the flip side, women’s heart attacks were dismissed as “anxiety. ” The outcome? Higher mortality in women under 50 Not complicated — just consistent..
Trust Erodes — Especially in Marginalized Communities
When a community sees itself consistently excluded — or worse, used as test subjects without benefit — trust evaporates. Plus, that’s not irrational. Still, participation drops. And once trust is gone, recruitment gets harder. It’s rational and justified. Science stalls.
The legacy of Tuskegee still echoes today — not because people are “anti-science,” but because they remember who got left behind Most people skip this — try not to..
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.
Real-world patients have comorbidities. They live in environments that affect their health — from air quality to food access. They take other meds. If your study doesn’t reflect that, your results are… limited No workaround needed..
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) Not complicated — just consistent..
Ask yourself:
- Is this criterion necessary for safety?
On top of that, - Does it exclude people who would benefit more from the intervention? And - Or is it just convenient? - 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?
Which means - Partner with community clinics, churches, shelters, food banks. - Use plain-language materials in multiple languages.
In real terms, - Offer transportation help, childcare, or flexible hours. - Hire community health workers — people who share language and culture with the target population.
This isn’t “extra work.” It’s part of doing justice It's one of those things that adds up..
### Who Owns the Data — and Who Benefits?
Justice also means thinking beyond enrollment. Who profits? And who owns the data? 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.
Common Mistakes (That Still Happen Every Day)
Assuming “Representative” Means “Convenient”
Recruiting from one urban academic center? In real terms, that’s not representative. It’s just easy.
Using “Safety” as a Catch-All Excuse
“Too complex to manage” isn’t a safety issue. Day to day, “High risk of harm” is. Don’t hide behind vague safety concerns to avoid inclusion.
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 Still holds up..
Thinking “Inclusion” Is Enough
Just adding people to a trial isn’t justice if you don’t support them through it. Here's the thing — 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. Ask:
- What matters most to you in this research?
Talk to community leaders, patient advocates, and people who’ve lived the experience before you design the protocol. - What would make you want to join — or stay in — a trial? - What has kept you out in the past?
Their answers might surprise you Less friction, more output..
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. Here's the thing — 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
This changes depending on context. Keep that in mind Nothing fancy..
Report Results Back to Communities
This step is shockingly often forgotten. Think about it: you collected data from a community — the least you can do is return to tell them what you found. On top of that, host town halls, create plain-language summaries, share what happens next. Research shouldn't be a one-way street Most people skip this — try not to. But it adds up..
Train Your Team on Cultural Humility
Not cultural competence — because that implies you've "mastered" understanding other cultures. On the flip side, cultural humility is ongoing. It means acknowledging what you don't know, asking rather than assuming, and being willing to be corrected Worth keeping that in mind..
What This Actually Requires
Let's be honest: none of this is easy. Because of that, it requires building relationships before you need anything from people. It takes more time, more money, and more patience. It means giving up some control.
But here's the thing — the research is better for it. But when you include diverse participants, you get results that actually apply to the people who will use the treatment. When you retain participants well, your data is more complete. 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. Consider this: every barrier is a decision. When we say "we couldn't include those people," what we often mean is "we chose not to Simple, but easy to overlook..
We can choose differently. Even so, 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.
Easier said than done, but still worth knowing.
The question isn't whether inclusive research is possible. The question is whether we're willing to do the work And that's really what it comes down to..
And that choice — that is up to us.
