After over six decades, the family of Henrietta Lacks has won, so to speak, a ruling in a case of medical research ethics. It was not so much a one-sided “win” as it was an acknowledgement of the importance of anonymity and consent to participate in research. It was also a win for the scientific community who can still access the late Mrs. Lacks’ contributions, unbeknownst to her.
This fascinating case was written about extensively in Rebecca Skloot’s The Immortal Life of Henrietta Lacks, published in 2010. It follows the 31 year-old African American woman (and wife and mother of five children) who was inflicted with an aggressive form of cervical cancer. In the early 1950s, 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’ death (due to her incurable cancer), the cells were propagated in a lab thanks to their cancerous nature, allowing them to continue to divide and replicate in an uncontrollable manner. The cells were distributed to scientists around the world for further studies and research, again without any consent from the source’s family members. In this way, the cells of Henrietta Lacks were immortalized. 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 cells were initially given an alternate name, but they were soon traced to Lacks. Subsequently her name, in connection to this scientific wonder, was published not long after her death.
In March 2013, the sequenced human genome of Henrietta Lacks was published. Again, no consent was sought or obtained from her family; however, this proposed an ethical dilemma in the scientific research realm given current laws regarding obtaining consent and maintaining anonymity of research subjects. Relevantly, there is a tendency toward mistrust of the medical community among African Americans for very understandable reasons (e.g. the Tuskegee Syphilis Study). Nonetheless, this was a murky area given that the cells were obtained at a time when these laws were not in place. Many questioned whether it was appropriate to assume that cells/specimens obtained from a patient (i.e. during a biopsy, surgery, autopsy) became the property of the scientist. This case was also unique because although the sequenced genome was not identical to Lacks’ original genome (given that cancerous cells are inherently mutated cells and through many divisions they change further), there are still potential implications for her descendants who have inherited part of her genetic makeup. Since her name was widely published as being the source of the HeLa cells and genome, it removes anonymity for her family members also. Talk about a major HIPPA violation! Imagine if the entire world had access to your grandmother’s genetic code and could find out information about your health or your risk for developing certain diseases. Most of us may not be under the media’s scrutinous eyes (for example, the way Angelina Jolie was), but we certainly would feel the injustice of this situation.
The HeLa cells have already 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. The genome was briefly public online before being withdrawn as communication with Lacks’ family began regarding the ethics of this fascinating case. Nearly five months later, the U.S. National Institutes of Health (NIH) and the Lacks family reached a consensus that the HeLa cells could be accessed with limitations: each request through the NIH will be discussed with the family and approved only with their agreement. In this way, patient confidentiality can be respected and scientific research can continue to benefit the world. In this way, the value of responsible and ethical research is reinforced. In this way, Henrietta Lacks’ immortality perpetuates.
HeLa’s contributions to science (click for larger image)