Trust in Medical Research: The Legacy of Henrietta Lacks, Part 2

Trust in medical research is critical to ensuring public support for and participation in clinical trials. David Lacks, Jr. discusses this and the legacy of his grandmother, Henrietta Lacks.
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In Part 1 of this 2-part series, we introduce you to Henrietta Lacks, whose immortal cells still grow in labs around the world, helping foster medical breakthroughs from the polio vaccine to AIDS treatments. In Part 2, we talk with her grandson, David Lacks Jr., about the impact of his grandmother’s story on the Lacks family, and how their experience illustrates the importance of trust in clinical research to the people who participate in clinical studies and trials. “Informed consent” isn’t just a checklist, it’s a sacred contract.

Interview with David Lacks, Jr.
David Lacks, Jr., Henrietta Lacks’ grandson, speaks frequently at conferences and events around the world about the Lacks family’s experiences in the wake of the revelation of the source of HeLa cells. I met him at one of those events, the Building Trustworthiness in PCORnet meeting in Washington, D.C., in March of 2016. I spoke to him again recently, asking for his thoughts on how his grandmother’s legacy is impacting the scientific community’s view of inclusion after the story of HeLa cells became a cultural conversation.

Q: How do you think the research community has changed since Henrietta’s story became more widely known?
There’s more access to research for communities of color now, but those same communities still distrust the scientific community. That’s going to take time to resolve, still.

Q: What do you see as the key to breaking that barrier?
There has to be more community-focused awareness and outreach. The research community needs to better understand that the biggest priorities in people’s lives don’t include participating in research. Participating still takes time and effort. It has to be made quicker, and easier, for people to get involved.

David Lacks, Jr. at NIH. Photo by Andrew Propp/ NIH

Q: What’s the most visible progress in this area, in your view?
There’s much more of an effort to include communities of color. There’s now more awareness in the community, versus 10 to 20 years ago, when someone would be dealing with a condition, particularly a chronic one, and they wouldn’t know how to get involved in a trial. Now, people are more aware that there are options for them, and their families, to extend their lives by participating in research. There’s more to being in a trial or a study than just a last-ditch, Hail Mary effort when standard treatment hasn’t worked.

Q: What’s been the biggest surprise since Henrietta’s story became headline news?
Well, from our family’s perspective, we’ve been surprised by all the opportunities to travel and speak to audiences around the world about how medical science can learn from our experience. Pharmaceutical companies, universities, so many people have wanted to hear from us. When the book came out, we felt like characters in a story, but pretty quickly we found ourselves speaking to packed rooms about how to do a better job of including patients, families, and communities in medical research.

Q: What’s one thing you’d like to say to the clinical research community in the context of your family’s experience?
That by having a more diverse group of people included in medical research, the medicine that comes from that research will be able to help more people. That includes women, who haven’t been included as much as they should be, either.

Building Trust Opens Pathways to Medical Breakthroughs
I’ll return to where I started: trust. As heartbreaking and disturbing as Henrietta Lack’s story is, the opportunity presented by it is tangible. Building trust between communities and the clinical researchers who rely on those communities to participate in their research can open up pathways to rapidly accelerating medical breakthroughs.

Paternalism is so 20th century. Let’s embrace collaboration, and inclusion, to unlock discoveries that save lives.

And thank you, Henrietta, for your gift to humanity.


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