More than seven decades after Henrietta Lacks’ cells were taken without her consent and used to create groundbreaking medical advances, her grandson Alfred Lacks Carter is working to transform her complicated legacy into a force for community healing and medical justice. Through the Henrietta Lacks House of Healing in Chicago, Carter is addressing the very issues that his family’s story brought to light: medical mistrust, health equity and the need for informed consent in healthcare.
Lacks’ HeLa cells have contributed to countless medical breakthroughs, from the polio vaccine to COVID-19 treatments, making her one of the most important figures in modern medicine despite the circumstances under which her cells were obtained. Now, Carter is channeling that legacy into community-based health education and advocacy, particularly around clinical trial participation and organ donation.
Carter has also authored Shadows of Immortality: The Untold Struggles of Henrietta Lacks’ Grandson, offering an intimate family perspective on how medical exploitation has affected generations of the Lacks family.
How does it feel to see your grandmother’s legacy continue to shape conversations around medical ethics and health equity, and how does the Henrietta Lacks House of Healing in Chicago aim to carry that legacy forward?
It feels wonderful. It’s a great accomplishment that my grandmother has virtually saved the world with her contributions with the HeLa cell, through in vitro fertilization, the polio vaccine, the COVID vaccine. Her cells, they just, they are phenomenal; it [leaves] you speechless.
And my organization, the Henrietta Lacks House here in Chicago, we’re a boots on the ground organization where we meet people where they are. We want people to understand that your health is your wealth, and health intelligence is number one.
What we do, we stress the importance of clinical trials, and we also stress the importance of organ and tissue donation. That way you can be immortal like her. So my organization, we’re here for the liberation of Henrietta Lacks.
Given the history of exploitation and mistrust in medical research, what role do you believe institutions and families like yours can play in restoring trust and promoting participation in clinical trials within Black communities?
Well, families like mine, the Lacks family in particular, we can break down those barriers of mistrust because we need people to understand that we need to participate in clinical trials. People of color need to participate in clinical trials so the medications that they come up with, [so] that they will work on us.
If it happened to my family and my grandmother, Henrietta Lacks, and I’m out here advocating, I’m advocating for clinical trials, then you should too. You should be aware and you should be educating other people on the importance of clinical trials.
Tell us about your book. What’s the name, why did you write it, and how can people find it?
The name of my book is Shadows of Immortality: The Untold Struggles of Henrietta Lacks’ Grandson.
And I wrote this book because I want people to have an inside story, an inside perspective from a family member about the shadows that [have] been cast on Henrietta Lacks and her family. And that impacted my mom’s life, my uncle’s life, and it impacted my life. So I just want people to understand that Henrietta Lacks was thirty-one years old when she passed away. A young lady. And she was a mother. And now she’s a grandmother and a great-grandmother. And we want to keep the legacy going.
Where can people get the book?
People can get the book from shadowsofimmortality.com or you can get it off of Amazon.
