You might have seen that in 2020, we gathered insights from ethnic minority groups in the United Kingdom to understand their motivations and barriers to taking part in clinical trials. Well, this year, we went a step further and spoke to ethnic minority groups in the United States (U.S.) too, to see if they held similar or different opinions.
We spoke to 18 participants across four different ethnic groups in a 90-minute qualitative interview, covering differences in socioeconomic group, gender, age, and a split of U.S. state locations. Prior to their interview, each participant gathered feedback on attitudes towards clinical research studies from members of their ethnic community. Insights from a total of 37 community members were included in this research.
Ready to join us to improve diversity in clinical trials? Keep on reading for a summary of the insights we gained. And together, we can take action.
The main barriers to U.S. clinical trial participation
Throughout the research, it was clear that there were five main barriers that play a key part in their decision-making when it comes to taking part in clinical trials.
Most participants value their families' opinions on clinical trials, and this can be a big factor when a person is on the fence with signing up for a clinical trial. This theme was seen most prominently in the Hispanic community, and a particular focus on family was also seen in the Native American group, which is often overlooked by society.
My husband has a different perspective. He doesn’t trust the pharmaceutical industry so I wouldn’t do it because he wouldn’t want me to. He’s my husband so it wouldn’t be worth the argument. — Hispanic
2. Previous experience
Unfortunately, negative experiences from past clinical trials have contributed to deep-rooted mistrust, which still has an impact today (for example, the Tuskegee Syphilis Study). People believe these unethical research studies are still happening, but they’re just not spoken about. This mistrust was most apparent in the Black American group but was underlying across all ethnic groups.
I am worried the same thing could happen again today in clinical trials — racism still exists, discrimination still exists — so yes it’s certainly a possible and I’m sure that its actually happened since but it’s just not public knowledge yet. — Black American
3. Holistic medicines
All ethnic groups mentioned using more holistic and natural remedies to cure the body, avoiding any substances that are not needed. This makes recruitment onto clinical trials particularly challenging because any medication would be seen as ‘unnatural’ and unsafe.
If I didn’t have to ingest something that would kill me then I would like to get involved for more representation. As a black woman often times my group is just ignored in pursuit of making things better. — Black American
There appears to be significant differences between the younger and older generation and their opinions on clinical trials, with the older generation across all ethnicities being more hesitant.
The younger generation is a lot different though. They’re just educated differently and what they’ve been exposed to growing up. The older generation emigrated from another country so they have a different mindset and different education. — Asian American
Most people agreed that religion plays a key part in decision making. However, almost all participants didn’t agree with this mindset — they believed that although some people will use religion as a reason to not take part, this wouldn’t affect their own decisions.
Being Christian myself, I can see why some may have problems with science. I believe God gave us doctors, nurses, pharmacists with knowledge given from God. — Hispanic
More needs to be done to overcome these barriers
There are significant barriers to clinical trial participation in U.S. clinical trials. And it’s time that we make a change to ensure these voices are heard and everyone has an equal opportunity to take part in clinical trials. So, what can be done to overcome the barriers? We asked the participants of our research to give one final piece of advice:
Listen to us and learn from us
Show us you value us
Don’t forget about us in the data
Respect our culture
Will you join us in taking this advice?
If you want to read more about this research, we go into a lot more detail in our report, where many more important insights from these ethnic minority groups are included. Make sure you give it a read here.