Henrietta Lacks was a 31-year-old African American mother of five who sought treatment at Johns Hopkins Hospital in the early 1950s. Doctors diagnosed Lacks with cervical cancer, and as medical records show, she received the best medical treatment available to any woman for this terrible disease. Unfortunately, treatment was unsuccessful and Lacks passed away in October 1951.

The first cells that could be easily shared and multiplied in a lab setting, HeLa cells were offered freely and widely by Johns Hopkins for scientific research. This cell line has contributed to many medical breakthroughs, from research on the effects of zero gravity in outer space and the development of the polio vaccine, to the study of leukemia, the AIDS virus, and cancer worldwide. Although many other cell lines are in use today, HeLa cells have supported advances in most fields of medical research in the decades since HeLa cells were isolated.

In the 1950s, when Henrietta Lacks was hospitalized, the U.S. health system had no established practices for informing or obtaining consent from patients when retrieving cell or tissue samples for research purposes, nor were there any regulations on the use of patients’ cells in research. It was common practice at Johns Hopkins for extra samples to be collected from cervical cancer patients during biopsies to be used for research purposes, regardless of race or socio-economic status. This collection of cells or tissue samples would not occur today without the patient’s full consent.

What happened to Henrietta Lacks in 1951, when the doctors took extra tissue for research without her consent, would not happen today. Today, if researchers want to take tissues or blood for research, Federal law requires informed consent.

If samples are taken for diagnostic purposes - if you have a biopsy done, a blood sample taken or your appendix removed - as long as a researcher has gotten approval to do research using those samples and your name or anything connecting you to the samples is removed, the researcher does not need to get your consent.

Specific to the HeLa cells, In 2013, Johns Hopkins worked with members of the family and the National Institutes of Health (NIH) to help broker an agreement that requires scientists to receive permission to use Henrietta Lacks' genetic blueprint, or to use HeLa cells in NIH funded research.

The committee tasked with deciding who can use HeLa cells now includes two members of the Lacks family. The medical research community has also made significant strides in improving research practices, in part thanks to the lessons learned from Henrietta Lacks' story.

Johns Hopkins has never sold or profited from the discovery or distribution of HeLa cells and does not own the rights to the HeLa cell line.

Johns Hopkins has worked in close coordination with several members of the Lacks family over the past decade to recognize and honor Henrietta Lacks, including scholarships, engagement with local schools and annual symposia. A critical part of these efforts has been the creation of both scholarly and community forums for addressing the implications of the Henrietta Lacks story from informed consent, to medical records privacy, to communication with tissue donors and research participants. Members of the family have often attended and participated in these programs, helping us shape Johns Hopkins’ public recognitions of Henrietta Lacks and share her story with the broader community. Learn more about how Johns Hopkins is working to honor the legacy of Henrietta Lacks.