Written by Hilary Broughton, manager of the Center for Community Health Partnership & Research (ICTS)
Henrietta Lacks—a poor, African-American tobacco farmer—presented at John Hopkins Hospital in 1951 with stomach pain and bleeding. She was diagnosed with cervical cancer at the age of 31. She was too sick to survive, yet her cells lived on.
The number of lives saved by research that utilized her cells is most likely in the millions, and scientists have produced more than 2 thousand pounds of her cells, the sales of which have generated millions in profits. However, her cells were taken without her consent or knowledge, and her family was never compensated.
Recently, Drs. Angela Brown and Vetta Sanders Thompson, Co-Directors of the Institute of Clinical and Translational Sciences/Institute for Public Health Center for Community Health Partnership & Research, presented the story of Henrietta Lacks and her immortal cells against the backdrop of three key ethical considerations: consent, privacy and monetization.
This community forum held at the St. Louis Science Center was a part of the ongoing Evening Events on Genetics & Genomics Community Series sponsored by the Academy of Science St. Louis and WashU’s Institute of Clinical and Translational Sciences.
Reactions from the audience of more than 60 community members ranged from outrage to awe—outrage that “if they did it to her, who else have they [researchers] done it to in the past or will they do it to in the future?” and awe that her cells unknowingly have become one of the best public health interventions of modern times.
Drs. Brown and Sanders Thompson presented Henrietta Lacks’ story as a context for a discussion of precision medicine. They noted that while current medicine is symptoms-based, modern medicine will be genetics-based. Precision medicine is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle, which will allow doctors and researchers to predict more accurately which treatment and prevention strategies for a particular disease will work in which groups of people. It contrasts a one-size-fits-all approach, where there is less consideration for differences between individuals.
While precision medicine holds promise for more effective treatments and prevention strategies, Dr. Sanders Thompson emphasized the importance of people to understand the research enterprise, their rights, and to be very thoughtful about what they want to participate in and what they do not. She reiterated, “Ask every question you have.”
Through the moderated discussion, Brown and Sanders Thompson challenged the audience to think about what they would need to know in order to consent to genetic testing, top concerns about protecting the privacy of genetic material, and thoughts regarding monetization of genetic material and what should be done with resulting funds.