Henrietta Lacks is immortal. Or, more accurately, her genome is. The HeLa (short for Henrietta Lacks) cell line is one of the most important scientific tools of the past century. They all originate from the original sample taken from the cancerous cervical tumor of an African American woman in the 1950s. Prior to their discovery in 1951, scientists had never been able to preserve the life of human cells outside the body for a significant amount of time, something crucial to many research questions. Now, labs all around the world can grow HeLa cells, and many do.
Since, HeLa cells have contributed to numerous scientific discoveries that have revolutionized medicine and molecular biology. HeLa cells were crucial in the development of the polio vaccine, in vitro fertilization, the discovery of human telomerase, and most recently the development of the vaccine for COVID-19.
While there is no arguing that HeLa cells are an excellent discovery in science, they also bring with them important concerns about the state of research ethics and genetic privacy.
Lacks’ cells were sampled without her knowledge at Johns Hopkins Hospital in Baltimore, Maryland during a treatment for her cervical cancer. Scientists had been trying with no success to isolate a human cell line, so when they were taken no one considered that it might work, though at that time they would not have needed permission even if they did. Lacks’ cells were being used in labs all around the world all without her family’s knowledge.
When the Lacks family first learned about the existence of HeLa cells, they were rightfully angry and confused. The Lacks had little to no understanding of what it meant that their family member’s cells were still alive; they did not know if Henritta’s legacy was being mistreated or if they were at risk because of its existence.
The collection and commercialization of the HeLa line has raised a lot of questions and concerns about consent and compensation in genomic research. Informed consent was simply not an ethical concern at the time Lacks’ cells were taken without her knowledge. Lacks’ story is just one example in biomedical research’s long history of experimenting nonconsensually or with misinformation, particularly on at-risk groups such as minority groups or children.
The acquisition of Lacks’ cells, while acceptable at the time, raised further concerns about the importance of permission for use of someone else’s biological samples in research. Much of this concern, particularly in genomic research, comes from the personal nature of one’s genome. In 2013, a German research team published a paper containing the sequence, a genomic analysis, and the RNA profile of the HeLa cell. The Lacks family responded instantly with concerns about such information being publicly available, because as her descendents, they share a significant portion of their genome with Henrietta’s cells. Despites their concerns, the paper remained publicly available until another lab proved that it was possible to gain information about the genetics of family members from data like what was published about HeLa.
Since then, the Lacks family has agreed to the publication of the HeLa genome and the re-release of some of the data, under the condition that the information is in a database for which researchers must request access. The cells are only permitted to be used for biomedical research and the family is not to be contacted. The panel that helps approve access to the database holds one of Lacks’ family members.
The NIH has also been updating guidelines on informed consent and the storing of genetic information in part due to cases like Lacks’. On the bright side, the research community has put in place and continues to update strict policies on what is considered ethical and consensual research as they move forward in collecting samples. But the general consensus indicates that the research community is unwilling to retroactively construct these ethical frameworks for similarly used nonconsensual samples, as such a feat would halt many current projects.
The use of HeLa cells also raises questions about compensation in research. Lacks’ cells led to many lucrative scientific discoveries, but her family remained poor despite the success of these developments. They still are not compensated for work done on HeLa cells. In 1990, the Supreme Court of California ruled in Moore v. Regents of the University of California that cells discarded from a person are not that person's property anymore. At least legally, this suggests that the HeLa cell line is not the property of the Lacks family and they are therefore not entitled to financial compensation.
HeLa cells are arguably some of the most important cells in scientific history. They have helped revolutionize medicine in countless ways. However, they are unfortunately part of medicine’s long history of exploiting under-informed, underrepresented groups. The Lacks family’s work and advocacy has helped drive changes to existing ethical frameworks, making progress in biomedical research more ethical, but it is important that these policies are continuously reviewed and updated so that privacy can continue to be respected as research continues.
Note: If you’re interested in learning more about Henrietta Lacks, I recommend The Immortal Life of Henrietta Lacks by Rebecca Skloot.
Edited by: Eric Lee
Graphic Designed by: Olivia Fu
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