- I genuinely always wanted to get into science because I had a lot of questions.

I wanted to know why the world around me was functioning the way it was.

My father actually died of cancer when I was 18 and it was extremely eye-opening to me.

I had always been interested in genetics before that and specifically now, I study early detection of cancer.

And I was really interested in how the environment was tied to healthcare, how healthcare was tied to racism, how racism was tied to disease risk.

The history of racism in this country is so ugly and disturbing especially in the medical and research fields and a lot of people shy away from it.

A lot of physicians fail to recognize the historical racism that has dictated the relationship between black people and the medical and research fields.

We can't ignore this stuff anymore.

(upbeat music) - [Narrator] Here in a university of Washington Research Lab, Helen Chu's team is studying strategies to fight against influenza, COVID 19 and other respiratory viruses.

Chu was a lead investigator on the Seattle flu study which first identified community transmission of the Corona virus in the US.

She's also done studies on Remdesivir, one of the drugs used to treat Corona virus in hospitalized patients.

- We were the initial epicenter so, we had a lot of patients who had Corona virus.

And so we enrolled them in a clinical trial.

Clinical trials are studies of things like drugs or vaccines that we give to people to either treat or prevent something.

- [Narrator] It's a multi-step process that usually takes years because it's designed to make sure treatments are safe and effective.

And to do that, it's important to recruit a wide array of voluntary participants.

- We need to capture a breadth of the different types of people who would get the disease, to be able to understand if it protects all of the groups.

- It's not about racial differences, it's about ancestral and genetic difference, geographic difference.

We need diversity of people from across the world.

And that's what we're really asking for is when we have that diversity then it isn't just, white European ancestry that's being studied or understood and or even set as the benchmark of the standard of health.

- In the United States, it's become very clear that people who participate in clinical trials tend to be white, tend to be educated, tend to be wealthier than the general population and are not representative.

- [Narrator] An analysis of 230 vaccine trials across the US over the past decade, seems to confirm Dr. Chu's observations.

And only a fraction of studies reported information on race and ethnicity as part of the research.

Out of the smaller set of studies that recorded demographic breakdowns, data showed that Black, Latino and American Indian adults were underrepresented when compared to US census data.

A lack of diversity in studies can potentially lead to skewed findings, less effective treatments and missed opportunities for research.

- A really great example of how black people are not represented in research, relates to breast cancer.

Even though white women are slightly more likely to get breast cancer, black women are more likely to die of breast cancer.

A big part of that is because people of African, specifically West African ancestry, are more likely to get triple negative breast cancer.

Now, this is characterized as an aggressive form of breast cancer that doesn't respond to standard treatment but there's not much acknowledgement for the fact that standard treatment was developed with clinical trials that focused on white patients.

The research that is being done on breast cancer is studying the type of breast cancer that white women are most likely to get, which is not triple negative breast cancer.

And this directly impacts how therapeutics are created.

- [Narrator] So what are the barriers to diversifying our clinical studies?

One word that keeps popping up is trust.

- [Dr. Chu] If you look at traditional, underserved populations, we have not done a good job as scientists in making sure that their voices were heard or doing the right things by them.

- [Edwin] There's been a proven track record and there are receipts that medicine has abused and used BIPAR communities for the purposes of gaining medical knowledge.

Often times without consent.

- [Dr. Chu] The prime example of course is Tuskegee.

- [Narrator] Let's take it back to 1932 when the US public health service, voluntarily enrolled 600 black men in Tuskegee, Alabama in a steady under false pretenses.

Researchers were interested in tracking the natural course of syphilis, a sexually transmitted infection that untreated can lead to blindness nerve damage and death.

But the researchers never told the participants they were studying syphilis and hid their true objective.

- [Edwin] United States public health services came in, told this community that was poor, that didn't have much medical knowledge, that they carried something called bad blood.

And this bad blood can be taken care of and they could receive health benefits if they just were part of this study.

They would give them food, so there was incentive that they were offering them.

- [Narrator] The study was meant to last six months.

Instead, it went on for 40 years.

By 1947, penicillin was becoming widespread as a cure for syphilis.

Yet researchers withheld treatment from participants and continued to observe the men until their deaths.

The Tuskegee study is probably the most well-known historical example of unethical experimentation in recent memory.

But there are many others.

- [Edwin] You had forced sterilization of native people and black women in Canada and in this country.

Another recent example is the forced hysterectomies of undocumented folks that were held in detention centers.

Folks see that, they hear it, it's in the news.

So today we're in the heart of one of the largest pandemics the world has seen and we're seeing the effects.

- [Announcer] Black Americans expressing high rates of concern about getting vaccinated.

- To know that this is where people are coming from and to be able to have them, be willing to be part of a study, you have to take into account the valid distrust that they have for many of the systems that are in place.

There's this history to reckon with.

- I remember being told by my grandmother that you earn trust in drops, but you can lose it in buckets.

And the US medical system has lost multiple buckets of trust.

And it can only earn it back in drops and that takes time, that takes generations and I don't even know if we're in the middle of that work.

We may be in the beginning.

And so we can't just get upset and throw our hands up in the air and say, "I can't believe people don't wanna take this vaccine."

To me, when I heard those words it's, "I have more work to do."

- It has been, been very clear that this is a priority now for research.

That it comes up over and over again in the discussions we have about how to make sure these populations are well-represented because this is where the need is.

- There is a reason for mistrust, but it comes from the untrustworthiness of the medical system.

I think it's now the job of medicine to own up to it.

It is now time for an institution to reckon with the reality of its racist history.

We can't change that unfortunately but what we can change is how we behave and how we move going forward.

- [Announcer.]

This series is made possible in part by the generous support of Premera Blue Cross.