Paying Tribute to Henrietta Lacks at Tuskegee University and at The Virginia Henrietta Lacks Commission, Richmond, Virginia

Laypeople may be unfamiliar with Henrietta Lacks, but most scientists in the fields of human biology and medicine recognize Lacks and have encountered her "HeLa" cell line in biology laboratories and biomedical research.^1,2,3 Her story illustrates how intentions in the name of scientific and medical advancement can have unanticipated consequences such as privacy violations and consent breaches.⁴ In today's human subjects and big data research landscape, the story has also brought to the limelight many bioethical issues worth considering. Such issues include, but are not limited to, obtaining informed consent prior to using tissues from clinical sources if individually identifiable, the need for education of research volunteers about what may happen to biospecimens collected for future research, and the need for transparency about forms of compensation or whether or not gain-sharing from research results is possible or even appropriate.⁵ In this column, we call attention to efforts by Tuskegee University and the Commonwealth of Virginia to preserve the legacy of Henrietta Lacks and to the unfolding ethical and policy impacts of the Henrietta Lacks story.

Henrietta Lacks

The Story

Henrietta Lacks was a 31-year-old African American woman with five children. She was born to a poor Southern tobacco farmer and worked the same land as her enslaved ancestors. She was raised in Clover, Virginia, where she is also buried. In 1951, she complained to doctors at Johns Hopkins Hospital's Gynecology Clinic in Baltimore, Maryland of spotting between her menstrual periods. Johns Hopkins was the only hospital near her that would treat Black patients. An examination of her cervix revealed a lesion confined to the cervix. A biopsy of the cervix was performed, and four pieces of tissue were taken, some sent to the pathology department for diagnostic evaluation, and some given to Dr. George Gey's tissue culture laboratory at Johns Hopkins. While Henrietta Lacks gave "operation permit" or consent for surgery, no one asked her permission to collect or share her samples for other reasons. It is worth noting that consent to medical procedures had been in place since 1914 after the court case Schloendorf v. Society of New York Hospital, 211 N.Y. 125. Consent for medical research was codified in the Nuremberg Code of 1949, and informed consent became popular in medical practice in 1957 following Salgo v. Leland Stanford Jr. Board of Trustees, 154 Cal. App. 2d 560. Lacks was diagnosed with "epidermoid carcinoma," with definite invasion of the stroma, and an aggressive form of cancer, adenocarcinoma of the cervix.⁶ As she was seen at that time as a poorly educated, indigent Black female without health insurance and with modest finances, she was placed in the hospital's ward for impoverished people. During the next several months, she received radiation treatment, which failed to prevent the spread of the cancer. She developed severe abdominal pain and experienced failure to void urine. Mrs. Lacks died on October 4, 1951 at the age of 31.^6–7

Biopsy and Culture

Henrietta Lacks' cervical biopsy was shared with George Gey, MD, director of the Tissue Culture Laboratory in the Department of Surgery at The Johns Hopkins Hospital, who collected specimens from surgical procedures performed at the hospital. Mary Kubicek, an investigator in Gey's laboratory, cultured Lacks' cells, which grew robustly compared with other cells. The cells from her cancer were named "HeLa" after the initial letters of her first and last names.⁸ For many years, credit was not given to her as the originator of the HeLa cell line. The cells were misrepresented as belonging to "Harriet Lane" or "Helen Lane."^9–12 Working with his wife and collaborator, Margaret Gey, Dr. Gey showed the prolific nature of HeLa cells.¹³ Later characterization revealed that HeLa cells contain human papilloma virus 18 DNA and changes in expression of microRNAs, which are associated with aggressive adenocarcinomas.^14–15

Production and Distribution of HeLa cells

Dr. Gey generously...