CURE students with Henrietta Lacks family members at Faneuil Hall during HUBweek conversation on health disparities. (Left to Right: Emily McMains (CURE Program Coordinator), Maya Dennis, Weaam Arman, Ellah Nzikoba, David Lacks, Stacy Mulei, Victoria Baptiste, Obed Posada, Kaelyn Brown, Hawa Barry, Senait Efrem, Sarah Nzikoba)
DF/HCC CURE Scholars Meet with Family of Henrietta Lacks at MGH-Sponsored HUBweek Event
October 26, 2016
In her 2010 New York Times Bestselling account, The Immortal Life of Henrietta Lacks, author Rebecca Skloot describes how one family’s medical tragedy laid the foundation for a few of the most groundbreaking medical advances of the previous century. The book tells the story of HeLa cells: derived from cervical cancer cells collected from Ms. Lacks in 1951 at Johns Hopkins University, HeLa cells are the first human cells successfully cultured and immortalized. Their study resulted in the development of the polio vaccine and advances in gene mapping and cloning, and they are still widely used in cutting edge biomedical research today. However, until the painstaking investigative work undertaken by Ms. Skloot and Ms. Lacks’s daughter, Deborah Lacks, the origin of HeLa cells was largely forgotten. That medicine owes so much to tissue harvested from an impoverished African-American tobacco farmer without her consent or knowledge, and that, until the publication of the book, her family received no recognition for or benefit from the technology that has benefitted so many others, emphasizes the persistence of racial and ethnic health disparities in the United States.
DF/HCC's Continuing Umbrella of Research Experiences (CURE) Program engages high school and college students from backgrounds underrepresented in science in hands-on, mentored cancer research in research environments across Dana-Farber/Harvard Cancer Center. Beyond their research activities, CURE scholars participate in additional learning opportunities, including a book club. During the summer of 2015, CURE students read and discussed The Immortal Life of Henrietta Lacks together. Many students were deeply touched by the story of the Lacks family, both through the lens of the cultural context shared by many and from the perspective of young biomedical researchers, some of whom, themselves, had already conducted research using HeLa cells.
On September 29th, 2016, two members of the Lacks family, David Lacks, Jr. and Victoria Baptiste, joined Joseph Betancourt, MD, MPH, director of the Disparities Solution Center at Massachusetts General Hospital, at Faneuil Hall for a conversation on racial and ethnic health disparities. The event was sponsored by MGH as part of Boston’s HUBweek. A group of CURE alumni were able to attend the event and to meet with the Lacks family afterwards. Hugs and even some tears were exchanged as the group introduced themselves and contemplated the rich and complex history of Ms. Lacks’s contribution to medical science.
Both Lacks family members agreed that while better education of biomedical professionals and the public would lead to progress towards eliminating health disparities, both emphasized the importance of increasing representation of and access for underrepresented minorities in medicine and research. When asked what medical practitioners and scientists can do to build trust with minority patients, Ms. Baptiste, a practicing nurse in Maryland, said, “People will surprise you. They may not be ready to take in all the information given to them right at that moment, but you need to give them that information and let them decide what to do with it.” Mr. Lacks followed by saying that in order to build institutional trust among minority communities, there needs to be transparency and a two-way dialogue so that patients feel that they are “at the table and not on the table”.
A vital step for achieving the Lacks family’s vision is expanding the participation of underrepresented individuals in research and medicine. The mission of the CURE Program is to increase the pipeline of minority and economically-disadvantaged individuals in cancer research through facilitating access to exceptional student training opportunities in research labs at the cutting edge of biomedicine. CURE scholars aim high; alumni of the program pursue medical and doctoral degrees, graduate from elite institutions, and publish and present their work in high impact journals and international meetings. The young researchers who met with David Lacks and Victoria Baptiste at Faneuil Hall have the potential to dramatically transform the narrative of The Immortal Life of Henrietta Lacks and be part of the solution to ending disparities in health care.