Heartrending account of a woman whose impact on medical research was significant, following the covert acquisition of her cells by physicians
In 1951, an African-American woman named Henrietta Lacks visited The Johns Hopkins Hospital with a large, malignant tumor on her cervix [1]. Little did she know that her visit would change the course of medical history and spark a conversation about ethical rights in biomedical research.
During a biopsy, a sample of Henrietta Lacks' cancer cells was taken without her consent, marking the beginning of a groundbreaking discovery [2]. These cells, later known as HeLa cells, would become the first immortal human cell line and have been used globally for research on cancer, vaccines (including the polio vaccine), AIDS, and many other medical advances [3][4].
At the time, there were no legal requirements for informed consent to use patients' tissue samples for research, especially when taken during treatment [1][3]. As a result, Henrietta Lacks and her family were never informed or compensated for the use of her cells, a practice now widely seen as unethical.
The controversy surrounding the use of Henrietta Lacks' cells exposed serious US legal and ethical issues about tissue use without consent [1]. The Lacks family's struggle for recognition and justice highlighted how US legal and ethical standards were inadequate for protecting patients' rights regarding their biological materials.
The lack of consent and the subsequent exploitation of Henrietta Lacks' cells sparked change in bioethics and legal frameworks in the US. Modern ethical guidelines now require explicit consent before using human tissues [3]. In 2023, the Lacks family reached a settlement with a biotech company over the use of her cells, reflecting ongoing legal and ethical implications stemming from the original lack of consent [3].
The settlement was reported to have made both sides 'pleased' with the outcome [5]. Since finding out, Henrietta Lacks' family has been fighting for justice. In 2021, the World Health Organization held a ceremony to commemorate scientific breakthroughs made possible by Henrietta Lacks' cells [6].
Moreover, the hospital gathered with Henrietta Lacks' family members to cut the ribbon on the Henrietta Lacks Building, which was recently opened on the Johns Hopkins East Baltimore campus [7]. Johns Hopkins admitted it could have and should have done more to inform and work with members of Henrietta Lacks' family [8].
The outlet reported that the lawsuit claimed the history of medical experimentation in the United States has been the history of medical racism [9]. Civil rights lawyer Ben Crump claimed the procedure to remove Henrietta Lacks' cells left her in pain at the end of her life [10].
HeLa cells have been used in the creation of the polio vaccine and advancements in HIV, cancer, and infertility treatments. They have also been used to study the effects of toxins, drugs, hormones, and viruses on the growth of cancer cells without experimenting on humans [11].
The family reached a settlement with Massachusetts-based Thermo Fisher Scientific Inc, but the details have not been made public [12]. WHO Director-General Tedros Adhanom Ghebreyesus stated that what happened to Henrietta was wrong and she was exploited by science [13].
In summary, Henrietta Lacks' cells transformed medicine but exposed serious US legal and ethical issues about tissue use without consent, ultimately driving reforms in research ethics and patients' rights. Her story serves as a reminder of the importance of informed consent and respect for patient privacy in biomedical research.
News of the settlement reached in 2023 over the use of Henrietta Lacks' cells highlighted the ongoing relevance of ethical guidelines in health-and-wellness, particularly in scientific research involving medical-conditions such as cancer. The conflict surrounding the utilization of Lacks' tissue samples without informed consent raised debates about science, law, and human rights, underscoring the need for transparency and fair compensation in the use of such crucial resources.
