In my Bioethics course during my undergraduate years, we had discussed the curious case of Henrietta Lacks: a 31 year old African American mother who contributed to numerous modern day medical advancements upon her death without her or her family’s knowledge. I noticed that Henrietta’s story was currently in the news and learned that from these New York Times articles ( here and here) that she had finally (somewhat) been given credit for her contribution to science and medicine. You are probably wondering how this story even makes a little bit of sense. How can someone who has died contribute to progress in medicine without even knowing? Allow me an opportunity to explain the very interesting story of Henrietta Lacks and how she lives on through medical research.
Henrietta Lacks was diagnosed with cervical cancer and due to the aggressive nature of her condition, died in 1951 at the age of 31.1 Before her death, her doctors at Johns Hopkins Hospital extracted some of her tumor cells without her permission or knowledge, which appears to have been a common practice during that time. 2 When experimenting with Henrietta’s cells in the laboratory doctors found that the cancer cells exhibited the same aggressiveness in vitro as they did in vivo. 2. The same rapid proliferation doctors saw in Henriett’as cervical cancer tumor was observed in the extracted cells in a laboratory environment.2 The discovery of HeLa cells, what cells from Henrietta’s tumor became to be known as, was a tremendous finding because unlike any other human cell line available to researchers the HeLa cell line did not die off but instead flourished and earned the title of being immortal due to their ability to replicate very quickly.2 As a result of their immortality , HeLa cells finally provided researchers a way to have a stable base for experiments. As the word spread about the immortal cell line throughout the research community, HeLa cells began to be distributed across the world, making their way to thousands of research labs internationally. As evidenced by the fact that these cells “have been used in more than 74,000 research studies on almost every disease …[and]… have helped researchers develop a polio vaccine and gain insights into cell biology, in vitro fertilization, and cancer”, the HeLa cell lines has been tremendously valuable to research and the advancement of medicine. 2
Although the discover of HeLa cells have benefitted society, the ethical question still remain as to whether the doctors had the right to extract cells from Henrietta without her or her family’s consent for the benefit of science and society. 2 Until August of 2013, Henrietta Lacks’s family has had no say or consent on how Henrietta’s cells may be used, but now the NIH has reached an agreement with the Lacks family that will allow them to be involved in deciding how Henrietta’s genome data will be used in NIH funded research projects. 1 The actions of the NIH were initiated after the discovery of two studies that involved publishing Henrietta’s genome data; the Lacks family were not aware of either project. 1
Although the agreement only restricts the access of Henrietta’s genome to NIH funded research ( the use of HeLa cells continue to be unregulated) and does not entitle the Lacks family to any financial settlement, I do believe this is step in the right direction. 1 At the end of the day, the cells of Henrietta were extracted without her or her family’s consent and used in research across the world without the family’s permission. The Lacks family was particularly concerned about what researchers could find out about Henrietta Lacks and her successors down the blood line through analysis of DNA sequencing and this agreement provides the family with some control over how Henrietta’s DNA is used. 1 The key issue that the Henrietta Lacks case brings to the forefront is the privacy of one’s genetic information and where that line is drawn between personal rights and benefits to scientific research. What can be learned from DNA sequencing and analyzing the genomes of populations has been a hot topic in research and this case alludes to a need for a broad policy to be established regarding genome research and privacy of individuals and their families. 1
As Henrietta’s cells have allowed for numerous advancements in medicine, the abnormalities of other medical cases may provide insight in learning more about the progression of a disease and how to develop a cure. There are certainly advantages for science in studying human cell lines and the mutations and abnormalities associated with them, but that does not provide the privacy rights of an individual or his or her family to be violated for the benefit of science. Hopefully down the road, policies will be establish to better address the matter of genome analysis and privacy in a manner that facilitates scientific research while upholding the privacy rights of individuals.
If you are interested in learning more, please refer to " The Immortal Life of Henrietta Lacks" a book chronicling Henrietta's story by Rebecca Skloot.
1 Zimmer, Carl. "A Family Consents to a Medical Gift, 62 Years Later." Nytimes.com. New York Times, 7 Aug. 2013. Web. 27 Aug. 2013.
2 The Editorial Board. "Another Twist in the Saga of Henrietta Lacks." Nytimes.com. New York Times, 10 Aug. 2013. Web. 27 Aug. 2013.
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