Beyond the Dinner Table: Building Trust in Clinical Trials for Black Communities

Imagine opening your medicine cabinet and finding every bottle untested. That’s the reality without clinical trials, the cornerstone of medical progress. Yet, participation in these trials remains low within Black communities. This lack of participation creates a double-edged sword: Black people may use medications that haven’t been fully tested for their specific biology, potentially leading to less effective treatment. This not only impacts individual health outcomes but also widens health disparities in the long run.

The Issues

Recently, I sat down with family members to discuss their thoughts on clinical trials. Their concerns mirrored issues many Black people face:

• The “Guinea Pig” Fear: A worry of being experimented on without proper care. The historical exploitation of Black people in medical research fuels this fear.

• The Henrietta Lacks Effect: The unethical treatment of Henrietta Lacks, a Black woman whose cells were used to create the HeLa cell line, casts a long shadow.

• Compensation Concerns: There’s a desire for fair compensation beyond just covering copays. Traditional models often leave participants feeling undervalued.

• Distrust of Motives: A suspicion exists that pharmaceutical companies prioritize profit over participant well-being.

• Communication Gap: Complex medical jargon can be alienating, leading to a lack of understanding about trials.

Despite these concerns, a glimmer of hope emerged:

A Desire for Better Healthcare: Everyone wants effective treatments. My aunt on Verzenio, a cancer drug, expressed this sentiment. While hesitant to share information, she still takes the medication, hoping for positive outcomes. Although the drug company waived her copay in exchange for answering a survey every three months, she refuses to take the survey calls. She doesn’t trust them enough to share her experiences, even though she’s taking the drug in the hope it will work.

Conditional Participation: My other aunt, on Metformin for diabetes for over two years, would consider participating if the trial allowed her to continue taking the drug as usual. This highlights the importance of flexibility and tailoring trials to existing routines. She’s willing to do blood work and other tests and even answer survey questions about Metformin because she’s already using the drug, and she believes her information could be helpful.

Fair Compensation Expectations: My third aunt’s desire for a share in the profits reflects a need for fair compensation that acknowledges the value participants bring. She said she would participate in a trial only if there were significant monetary compensation. By this, she means receiving royalties or a percentage of the profits from every medication sold. She wants to ensure that if she’s contributing to the research, she and her family benefit financially, not just with free medicine but with a share in the profits.

Building Trust

If you’ve read this far, you might wonder how we can address these concerns. The answer lies in building trust. All of my aunts still take their prescribed medicines, and they still hope these medicines will work. This shows there’s a willingness to participate if trust issues are addressed. We need to figure out what factors will build that trust.

The underlying issue here is a lack of trust—trust that the medicine will work, trust that they aren’t being used as test subjects, and trust that they will be fairly compensated. Despite these trust issues, there is hope. My family still believes in the potential benefits of their medications, and this hope can be harnessed to increase participation in clinical trials among diverse groups.

We all want more effective healthcare. By building trust and addressing these concerns, we can make progress towards greater participation in clinical trials and, ultimately, better health outcomes for everyone.

Moving Forward:

Here’s how we can bridge the gap and foster trust within Black communities:

• Transparency and Education: Clearly explain trial procedures and the importance of diverse participation. Partner with trusted community leaders to deliver this information.

• Culturally Sensitive Communication: Use clear, concise language that avoids medical jargon.

• Fair Compensation: Explore alternative compensation models that acknowledge participant time and contribution.

• Community Outreach: Engage trusted healthcare professionals and community leaders to address concerns and build trust.

Let’s continue the conversation! Share this article, participate in discussions about clinical trials in your community, and learn more about how you can get involved. Together, we can build trust and ensure everyone benefits from medical advancements.