Before viewing HBO’s recent release of The Immortal Life of Henrietta Lacks, it is appropriate to gain an understanding of the true story that give rise to the film. The story begins with Henrietta Lacks, a poor black tobacco farmer from Virginia who reported to Johns Hopkins Hospital in 1951 with complaints of a “knot in her womb” and abnormal bleeding following the birth of her fifth child. After shuffling her to the segregated colored ward for treatment, Lacks’ physician gave her a devastating diagnosis: advanced cervical cancer. Less than a year later, just months after her 31st birthday, the malignant cells coursing throughout Lacks’ body caused her early death.
Yet unbeknownst to Henrietta or her family, she would continue to live on for decades following her death. During the course of her treatment, Henrietta’s physician, Dr. George Gey, received a sample of her cells. Dr. Gey incorporated the cells into his research, which involved an ongoing search for “immortal” cells, or cells that would continuously divide and grow after removal from a patient. Dubbed HeLa cells, Henrietta’s cells turned out to be the miraculous cells Dr. Gey sought; they would go on to revolutionize modern medical research. The cells played an integral role in the development of the polio vaccine, and their use was included in cancer, AIDS, radiation, and gene mapping research over the decades following Henrietta’s death. HeLa cells were also the first human cells to survive the cloning process in 1955.
Despite the widespread use of Henrietta’s cells, her family possessed no knowledge of their circulation until more than 20 years after her death. The Lacks’ family first learned about HeLa cells in the 1970s, when a scientist contacted the family to request their blood samples and other genetic materials. The family followed up on these requests with multiple inquiries about the status of HeLa cells and further information about their uses and distribution, but their questions remained unanswered until the late 1990s and early 2000s. During that period, the release of an award-winning documentary by the BBC and a bestselling book by Rebecca Skloot started to peel back the layers of the HeLa cell story.
Throughout their long and controversial history, HeLa cells raised a number of legal questions relating to the notions of informed consent and property rights. First, researchers all over the world used Lacks’ cells for medical research without her knowledge or consent (or her family’s). A landmark decision in the Supreme Court of California addressed a similar issue in the 1990 case Moore v. Regents of the University of California. In that case, John Moore argued that personal ownership of his cells continued after their removal from his body during a course of leukemia treatment. But the court disagreed, and denied Moore’s claim for conversion. The court’s weariness of Moore’s argument stemmed from fears that including bodily tissues under the umbrella of property rights would have a chilling effect on medical research. Based on this case, it appears there is little chance that a tort liability suit over the use of Lacks’ cells would have much success.
Yet other violations of Lacks’ personal information occurred as well. In 1976, Science Magazine published the article Genetic Characteristics of the HeLa Cell. Without seeking consent from the Lacks family, the article contained private information about the genetic markers contained in the DNA of Henrietta and her family members. Because DNA reveals the most fundamental makeup of a person’s body, and reveals private information about abnormalities and/or predispositions to disease, this publication constituted another circumstance where the Lacks’ family’s private information was put on public display without their consent. In a similar vein, Johns Hopkins released Henrietta’s private medical records to journalist Michael Gold in 1985 for use in his book A Conspiracy of Cells: One Woman’s Immortal Legacy and the Medical Scandal It Caused.
Some might call Henrietta’s story and its legacy a perfect storm of privacy violations. It is important to remember that the concept of informed consent barely existed in the 1950s, and statutory privacy protections such as HIPAA were still decades away from existence when her cells were first taken and used for research. Though it is now an extensive field providing comprehensive protections, the topic of medical privacy still faces some significant obstacles. One of the most difficult issues for researchers in the medical field to overcome is their inability to prospectively determine biospecimen uses and research. As HeLa cells displayed, sometimes the range of possibility connected to a specific cell or tissue sample is not determined until after scientists conduct further research on the sample. Patients are understandably weary of signing over samples for any and all uses, creating strict limitations on researchers and the ways they may use human samples. Other significant obstacles to informed consent include lack of understanding on behalf of the patient, questions surrounding the life of the consent, and ethical considerations regarding the proper time and scenario to ask patients for consent.
As the fabric of American healthcare continues to grow and change on a regular basis, these obstacles pose concrete challenges to healthcare professionals and legal practitioners in the healthcare field. Henrietta Lacks’ contentious cells may continue to teach us new lessons about privacy and informed consent for decades to come.