In May 2018, the Smithsonian National Portrait Gallery installed this portrait of Henrietta Lacks while three of her grandchildren looked on. The fascinating story of this important woman was revealed in Rebecca Skloot’s The Immortal Life of Henrietta Lacks (2010). I initially read this book during residency, then revisited it two years ago for a health care ethics class (at that time, I listed on Audible and it was even more striking!) Below is an updated post from 2013 after my initial read.
Henrietta Lacks was a 31 year-old African American woman, wife, and mother of five children who was inflicted with an aggressive form of cervical cancer. In 1951, cancerous cells were obtained from Lacks’ cervix without her consent, as informed consent was not legally required at that time in the United States. Soon after Lacks’ early death, her cells were successfully propagated in a lab thanks to their cancerous nature, allowing them to continue to divide and replicate in an uncontrollable manner. The cells, named HeLa (using the first two letters of the patient’s first and last names), were distributed to scientists around the world for further research, again without any consent from the patient’s family members. Amazingly, it is thought that the number of HeLa cells in existence today far exceeds the number of cells in Lacks’ body (for reference, a human body has over 60 trillion cells).
The HeLa cells have been used in many important medical and scientific research projects, including the development of the Polio vaccine by Jonas Salk, as well as research in AIDS and cancer. These immortal cells have the potential to be used in many more scientific discoveries, but as it is now apparent, they give “intellectual property” a whole new meaning. In March 2013, the sequenced human genome of Henrietta Lacks was published, raising several complex issues as the realms of ethics, medicine, research, and race intersected. The most obvious issue was patient autonomy because no consent was sought or obtained from the patient or from her family members. Such laws were arguably not in place during Henrietta’s time, but they later became the norm.
A second issue highlighted by this case centers on ownership of living tissues/genes and benefits/payments to tissue donors. Diamond v. Chakraborty was the first case in which a living entity could be patented as intellectual property. However, subsequent legal cases showed that simply supplying tissue that led to lucrative breakthroughs in research did not give the tissue donor any rights to ownership or monetary gains. Despite this ruling, I feel that an injustice still exists; while Henrietta’s cells helped countless people around the world, the family members could not even afford health insurance.
A third issue is patient privacy. Henrietta died long before her cells benefited science and society. Her family did not know that her cells, genetically linked to theirs, were out in the world. Their privacy was grossly invaded when the genome from one line of HeLa cells was published, allowing people to trace the genes back to Henrietta and her kin. Any genetic information has the potential to help but also harm. For instance, health and life insurance companies might use genetic information to deny coverage, and employers may deny employment opportunities. This is one of the many reasons I am wary of genetic testing services that are commercially available!
Most of us do not exist under the media’s scrutinous eye (for example, the way Angelina Jolie was during her decision to undergo a prophylactic bilateral mastectomy), but we can still empathize with the injustices of Henrietta Lacks’ case. Striking a balance between patient autonomy and allowing forward momentum in scientific research is no easy task. Cases such as Henrietta Lacks provide needed awareness of patient’s rights while simultaneously promoting invaluable scientific gains from human tissue research.