The Evolution of Bioethics since Henrietta Lacks: What Science Has Learned and What Science May Face

Writen By: Madeline Day

The word “bioethics” is a combination of the Greek words “bio,” meaning life, and “ethos,” meaning behavior. Since Aristotelian times, philosophers have pondered the boundaries of experimentation and ethics, but advances in scientific research during the 20th century have brought forth a new set of challenges. With new discoveries in cell and molecular biology come new questions of how scientists should manage the use of technology.

Cell and tissue donations have been vital to research since the 19th century, but it was Henrietta Lacks’ case that propelled the issue of donor rights into the public sphere.

Born in 1920, Henrietta Lacks grew up in rural Virginia before moving to Baltimore, Maryland with her husband and three children. Upon feeling a discomfort near her abdomen, Henrietta visited the Johns Hopkins Hospital, where doctors discovered a malignant tumor on her cervix. As part of a routine biopsy, a doctor sampled her cervical tissue and sent them to Dr. George Otto Grey, a Johns Hopkins researcher who specialized in cultivating human cells outside of the body.

While Henrietta’s case seemed no different than other cancer cases at the surface, Grey discovered that her cells had a peculiar quality; they were immortal. In contrast to normal body cells, which die within days of being cultured in the lab, Henrietta’s cells not only remained alive but also divided rapidly. For the scientific community, Henrietta’s cervical cells were a research opportunity that enabled them to conduct long-term cell research, replicate experiments, and study a wider range of diseases and conditions. Dr. Grey developed a cell line from Lack’s cells by using a roller-drum technique, rotating test tubes that contained the cells in order to optimize growth. The cell line, named HeLa, came to the forefront of countless experiments--including the experiments that lead to the creation of the polio vaccine. Yet, for Lacks, the abnormal quality of her cells lead to her death in 1951.

Henrietta’s contribution to scientific research highlighted an ethical issue within the medical community, forcing researchers to consider the implications of cell donations. While Henrietta knew that samples of her cells were taken, she never knew that they were used for research, and neither did her family. It wasn’t until the 1970s that the Lacks family became aware of the existence of HeLa cells when they were contacted not for recognition but for familial blood samples that were needed for research. By that time, HeLa cells had already been used in numerous experiments. They had been sent to space, taken part in a Soviet mission to investigate the impact of space on human cells, and were even used to determine whether X-ray technology was safe for humans. The medical advancements undoubtedly changed science for the better, but critics were stunned that HeLa cells had taken part in aerospace missions before the Lacks family was made aware of its existence. With HeLa’s prevalence in research experiments and papers, the Lacks family also had to grapple with the knowledge that their genetic information was published and readily available. Shocked by this newfound information, the family began campaigning for awareness about Henrietta’s sacrifice and for increased patient privacy rights.

After years of work, Lacks’ story was eventually told from a human perspective. She was featured in movies such as “The Immortal Life of Henrietta Lacks” and commemorated through annual memorial lectures at Johns Hopkins. Her story proved that behind medical breakthroughs, there are lives and stories of remarkable individuals. The increased public awareness led to a much-needed discussion regarding cell and tissue donation. Should donor families have legal and moral control over the use of donated tissue? What financial claims did families have on drugs developed using donated cells, if any? Today, bioethics and cell donations are subject to clearer guidelines. While there is no definitive answer to questions involving donor privacy rights, there are organizations in place to address bioethical issues and set regulatory standards. In 2001, the Council for International Organizations of Medical Services (CIOMS) published the International Guidelines on Bioethics in 2001, providing a unified international basis for how scientists should approach ethical conflicts. Moreover, research institutions around the country, including Stanford University, have employed bioethicists who advise scientists when it comes to advances in embryonic stem cell research or gene editing. Scientists and bioethicists around the world agree on the importance of balance between life and science and between life and behavior. That is the very essence of bioethics itself.