In 1951, Henreitta Lacks, a 31-year-old African American woman, learned she was dying of cervical cancer. During her treatment process, doctors at John Hopkins Hospital sampled cells from her cervix and passed them on to a researcher without her knowledge, as was common practice at the time. To these researchers delight, Lacks’ cells were able to survive and reproduce in a laboratory culture indefinitely. This was something scientists had long endeavoured to achieve, but their many attempts were not successful- until Lacks’ cells came along. Her cells, dubbed “HeLa” for the first two letters of Lacks’ first and last name, were a game changer: scientists could now carry out medical experiments that they previously could not perform on a living person. HeLa cells went on to been used in ground-breaking medical research that led to a number of advancements in science, including the polio vaccine, cloning, chemotherapy, gene mapping, AIDs treatments, and in vitro fertilization.
Lacks’ story garnered widespread attention in 2010 with the publication of Rebecca Skloots bestselling novel The immortal life of Henrietta Lacks. Skloot attempted to track down Lacks’ family in order to learn more about the woman whose identity had been obscured for decades while companies profited off of her cells. The book fuelled a much-needed conversation about the moral obligation scientists have towards their patients. Despite the tremendous contributions of HeLa cells in the fields of science and medicine, the case still evokes questions regarding the serious legal and ethical issues regarding informed consent: neither Lacks’ nor her family gave consent for her cells to be biopsied or cultured. Her family only became aware of the cells and their use in the 1970s, and to this date, have had little success in gaining control over the use of HeLa cells. In 1973, researchers contacted the family in search of blood samples from them, but when the family began seeking answers from researchers, they ignored them. Henrietta Lacks’s daughter Deborah insisted on getting answers. In response to her questions, a researcher autographed a medical textbook that he had written and told her that all she wanted to know about HeLa cells lay within its pages.
To give the story justice, it is essential to paint the picture of medical care during Henrietta’s time. The social treatment of African American’s in the 1950s played an integral role in their medical care. Lacks’ ended up at John Hopkins Hospital because she was Black, and at that time, there weren’t many hospitals that were treating the “coloured”. Additionally, she had no money and Hopkins was a charity hospital, so she ended up in the public wards, which were segregated from the areas where White patients were treated. Amongst others, Skloot states that the treatment Henrietta received was standard procedure, which it may have been, but given the climate in 1950s America, it is difficult to say that the exact same would have happened to anyone else.
Nowadays, we have the privilege of learning from the malpractice of the past. However, this didn’t stop German researchers, funded by the National Institute of Health (NIH), from sequencing the HeLa cells’ genome and publishing their data in 2013 without the knowledge or consent of Lacks’ family. Although they technically didn’t break any laws, the action upset the Lacks family and drew widespread criticism. One of the main issues is that research reviewers and the journal Nature did not raise the issue of privacy before they recommended the paper for publication. Following the ordeal, the director of NIH, Francis Collins, reached out to the Lacks family and after much discussion a deal was brokered whereby there would be restricted access to the data. Applications to use the genome data will be reviewed by a community on which two members of the Lacks family will serve. For the first time, the Lacks family will be aware of-and play a crucial role in- the science that uses the HeLa cells genome.
Lacks’ story has generated tremendous public attention and has gotten people talking about the world of research. So much so that some are calling for a change in rules and policy, specifically emphasizing the need to require consent from patients before biospecimens are studied. Some have even suggested that patients be financially compensated if their specimens lead to medical breakthroughs down the line. Given the scores of medical advances gifted by HeLa cells, it is fitting that Henrietta Lacks’s story serves as a catalyst for policy change. However, currently in the US, it is still possible to use specimens and generate data without the permission of the donor as long as any identifying characteristics are removed from the specimen (in this case personal information). The flip side is that it is increasingly difficult to maintain non-identifiability in our age of technological advancement. New regulations are currently under development with health services departments requesting public input. These should afford future generations of research participants their due- an option Lacks did not have.