The HeLa Cell Controversy In The Genomics Era

Blog post by Robert Eppley. See the video here for more information about the origins of the post. This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License

Henrietta_Lacks_historical_marker

Road marker commemorating Henrietta Lacks. Photograph taken by ‘Emw’. Reproduced under a GNU Free Documentation License license. Available online at: https://upload.wikimedia.org/wikipedia/commons/7/72/Henrietta_Lacks_historical_marker%3B_Clover%2C_VA%3B_2013-07-14.JPG

The HeLa cell line, established in late 1951, is the oldest immortal human cell line. For over 60 years, the HeLa cell lineage has been propagated countless times and played a critical role in the development of vaccines, such as the one to combat Polio. The circumstances under which these cells were obtained from their originator Henrietta Lacks, and the manner in which those cells were monetised, has become a well-known controversy. In this post, I explore how problematic use of the HeLa cells did not stop in the 1950s, but continued into the recent genomics era.

On 1st February, 1951, Henrietta Lacks reported to Johns Hopkins Gynecology Clinic and received a cervical cancer diagnosis. After a failed series of radiation therapy, Henrietta’s cancer spread rapidly and she was pronounced dead on 4th October, 1951. There is no evidence that Henrietta nor her family had knowingly consented to having her cervical cancer cells used for study. Despite this, her cells were collected from tissue samples in Dr. George O. Gey’s Johns Hopkins laboratory. Dr. Gey and his colleagues found Henrietta’s cells to be remarkably effective and efficient at rapid proliferation, and dubbed the cell line “HeLa” as a contraction of the name Henrietta Lacks.

At the time, the only other successful immortal cell line in existence was that of a mouse named L929, which had been successfully produced in 1943. Ironically though, Henrietta’s identity was not as well sustained alongside the cell line as the mouse’s had been, and her name was often mis-referenced to various pseudonyms like “Harriet Lane”. One philosophical scientific perspective posits that Henrietta “has achieved a kind of corporeal immortality through her eponymous cell line,” an immortality that supporters of the Lacks family might argue has allowed a scientific field to possess ownership over and reap benefits from a woman without her consent.

As of 2013, more than 74,000 laboratory studies had used HeLa cells in their procedures. Despite the lack of consent from Henrietta and her family, the Lacks family had, until 2013, received no control over the use of Henrietta’s cells nor major acknowledgment from either Johns Hopkins or any other major research institute that had aided in the commodification of Henrietta’s cervical cancer cells.

Indeed, though Henrietta had died in 1951, it was not until 22 years later – 1973 – that the Lacks family was even notified of the HeLa lineage. In this year, a lab group notified the Lacks family of the HeLa cell line while pursuing familial blood cells to investigate conserved genomic elements in the Lacks family. Following this contact, the Lacks family had trouble accessing more information about the use of their mother’s cervical cancer cells.

EMBL_außen

The European Molecular Biology Laboratory at Heidelberg. Photograph by ‘Albrecht62’, reproduced here under the Creative Commons Attribution-Share Alike 4.0 International license. Available online at: https://upload.wikimedia.org/wikipedia/commons/8/86/EMBL_au%C3%9Fen.png

A more recent event in the series of HeLa cell controversies came in 2013 when the European Molecular Biology Laboratory (EMBL) published the full genome sequence of the cells in full. The EMBL decision was ethically questionable in a number of ways. Because of the potential implications of a full genome analysis – the potential for it to harbour information indicative of unknown genetic predispositions, for example – the typical procedure for release is one which ensures consent on all parties that may be psychologically affected by the information.

As a result of the EMBL full genome analysis, the HeLa cell line was made more versatile as a component of lab research. Furthermore, the addition of this resource likely enhanced the quality of future HeLa-based research by uncovering previously unknown and abnormal factors about the cell line. In addition, the EMBL claims that the study ultimately highlights the vast number of differences that can be identified between a cell line and another given human reference. Perhaps the EMBL felt that the scientific importance of the study to the biological field was great enough to outweigh the potential deleterious effects it may have on the Lacks family.

Final closure of the public controversy came in the same year, when the United States National Institutes of Health (NIH) and the Lacks family reached a compromise, ultimately allowing the NIH to store the HeLa genome in a controlled-access database for researchers to use, rather than having open and public access to it.

The newer controversy of the sequencing of the DNA of HeLa has stimulated debate on the role of access to genomic data and privacy. However, the NIH has stressed that the agreement with the Lacks family and the solution adopted was tailored specifically to the sequence of the HeLa cells, and did not set a “precedent” beyond that. How privacy and openness is managed in genomics research involving human subjects is a matter that is far from closed.

 

Sources used:

Hudson, K. L. and Collins, F. S. (2013) Biospecimen policy: Family matters, Nature, Volume 500, pp. 141–142.

Lucey, B. P., Nelson-Rees, W. A. and Hutchins, G. M. (2009) Henrietta Lacks, HeLa Cells, and Cell Culture Contamination, Archives of Pathology & Laboratory Medicine, Volume 133 Number 9, pp. 1463–1467.

 

See also:

Church, G., Heeney, C., Hawkins, N., de Vries, J., Boddington, P., Kaye, J., Bobrow, M., Weir, B. and P3G Consortium (2009) Public Access to Genome-Wide Data: Five Views on Balancing Research with Privacy and Protection, PLoS Genetics, Volume 5 Number 10, e1000665.

Skloot, R. (2010) The Immortal Life of Henrietta Lacks.

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