Patients as Partners and the Legacy of Henrietta Lacks: A Q&A with David Lacks

Henrietta Lacks, a poor black tobacco farmer and loving mother of four children, was an unsung hero for too long. After her doctor collected cells from her cervical cancer tumor in 1951, Henrietta unwittingly had an integral role in the transformation of biomedical research over that past six decades. The cells, known as HeLa, were the first human cells to grow and divide continuously in the lab, making research on tissue culture possible and contributing to many huge advances in medicine, such as the development of modern vaccines and cancer therapies.

Yet, for 20 years after Henrietta’s death from her cancer, the Lacks family had no idea that her cells were still alive and powering medical advances. For decades beyond that, they did not benefit from these medical advances or from Henrietta’s contribution in any way — even in public awareness and credit for her legacy.

Awareness of Henrietta’s contributions changed in a major way after author Rebecca Skloot partnered with the Lacks family to report The Immortal Life of Henrietta Lacks. The book, published in 2010, became a critically acclaimed bestseller. It chronicles Skloot’s journey with Henrietta’s daughter, Deborah, (known as Dale to her loved ones) to uncover Henrietta’s story, weaving in details of the science of HeLa cells with the complexities of the Lacks family’s experiences coming to terms with their emerging knowledge of how those cells had been used without their consent. An HBO movie based on the book is now being produced by Oprah Winfrey, who also stars as Deborah.

Since the book’s publication, members of the Lacks Family have been engaged in sharing their matriarch’s legacy and supporting scientific advancement — now with an active role as partners in research and education. Last week, Henrietta’s grandson, David Lacks, visited The Children’s Hospital of Philadelphia as an invited speaker at an event sponsored by CHOP’s Center for Data-Driven Discovery in Biomedicine for a small group of local high school students and CHOP investigators. His talk, and his family’s efforts, embody a transformation in biomedical research that is still underway today, as scientists and clinicians increasingly embrace patients as partners in research. The National Institutes of Health (NIH) now collaborates with the Lacks family to evaluate requests to use HeLa genomic data.

Cornerstone sat down with David Lacks during his CHOP visit. The edited conversation follows below:

Since the book, your family has had more opportunities to get involved as partners in making future research decisions, especially with the use of the HeLa genome. What motivates you and your family members to do what you are doing now?

Since you can’t go back in time and change things, you just work to improve things for the future. That’s what we’re looking to do now. My uncle witnessed his mother go through cancer. I witness now, my friends and people I went to school with have cancer. Another friend of mine, her child has autism. A girlfriend of mine, her grandmother has dementia and advanced Alzheimer’s. You see all these struggles that people go through, and you think, if there’s something you could do out there to help ‘em, you want to help ‘em.

My family also wants to continue Henrietta’s legacy. Her cells helped the world. We want her legacy to continue and to let her legacy be known. We’re just trying to reinforce it and build our own legacy on top of Henrietta’s, so it’s the Lacks family and Henrietta Lacks, what they did for science and how they helped. It’s important. We all get sick, we’re all going to get old, we all might suffer from something. Why stand in the way? Why not try to be a catalyst to help and change, as opposed to blocking it?

What is important to know about partnering with patients, for people who work in healthcare and medical research?

As far as being on the (NIH) panel, I feel like it represents us not being in the dark. Instead of us being last to know about things or finding out things the wrong way or through the media, we actually find out about some of the stuff first. It makes us feel more inclusive, and more trusting. If something comes up that we’re not too familiar with or not easy about, we can work out the differences amongst ourselves before it gets out to the public. It’s better communication with us. And also for me, it’s a chance to see what’s going on, how the sequence is being used and what research is being done. And it’s informative to get to know the people who are making the decisions.

Have you had involvement in the HBO movie or heard from your cousin, who is a consultant to the production, how it is going?

I’ve heard how it is going, but I tell people I want to be surprised when the movie comes out so I don’t want to be too involved in it. We all met Oprah. She took pictures with everybody, and she had dinner with us. It was nice, and she was real down to earth. It was like a big family reunion.

One of the things with the movie coming out is that people who don’t read books or who are not into medical side of it, the movie will expose another group of people to [Henrietta’s story]. We’d like to expand it even more, so we are looking forward to that.

You have mentioned that you are one of about six family members now who go out on speaking engagements like this to help share your perspectives and your grandmother’s legacy. What is that experience like for you?

We’ve done probably over 100 of these engagements. We’ve been to universities, high schools, middle schools, laboratories, hospitals. Each time I go to one of these events, I learn something new.… We learn something that we can pass on to the next generation of scientists, researchers, and students. You go out and you talk, but you also hear people’s stories, and it makes a difference.

Do you see people’s perspectives changing about how HeLa and other cell lines are used?

I think so. We all want cures to diseases. Now that the book is out there, and the movie is soon to come, it will make people think things through with a different perspective. Nowadays I hear people say, you know, I used to work with the HeLa cells all the time and never paid no attention, and now I look at them completely different because I know the story behind them. Now kids are going into the medical field knowing the story. You might not know the stories behind all the other cell lines, but know that they do have a story. HeLa just happens to be the one that you know. Cells have a legacy and things that can affect people and their families.

Are any of the younger members of the Lacks family, your kids or nieces and nephews, now pursuing science?

I have a niece going into oncology. She just started college. My son, he’s an engineering type. I don’t know what he’s going to do, but he’s into everything. I have a cousin who just graduated from nursing school, so she’s an RN now at a hospital, and another one is going in. Now that we know our legacy, it has opened the doors for us, and some of us have chosen to walk through.

A lot of us are walking through doors to continue our Aunt Dale’s quest. She passed away shortly after reading the manuscript [of the book]. But she wanted information about her mother and the HeLa cells to get out there, so we just continued what she started. Without her, none of this would have happened, none of us would be here, the book wouldn’t be here.