The Immortal Legacy of Henrietta Lacks

Gerald Clarke

The story of Henrietta Lacks is a tale of science, race, death, discovery and exclusion but its most recent chapter promises to bring a more positive facet than the many before it.

Shortly before her death in 1951, Henrietta Lacks had a biopsy of her cervical cancer. The cells from her biopsy were unusual in that they grew and grew seemingly without limit. This cell line would go on to be possibly the most important cell line in biomedical research: HeLa.

HeLa cells are widely utilised in the biotech and pharma industry and have been instrumental in an absurdly wide variety of biotech research. However, the story is not all cures and scientific revelations as the HeLa cells were taken from the biopsy without the permission of Henrietta or her doctor. Although this was considered acceptable behaviour at the time, the conventions of that age have long since become inappropriate, and yet earlier this year, the HeLa cells were sequenced and had their genomes published without the permission of the Lacks family.

The paucity of engagement from the scientific community left the Lacks family in the dark for decades. They only became aware of the cells’ existence when researchers contacted them to ask for blood samples to compare with the cells.

It took many years for this story to become public, but in 1998 the BBC produced a documentary about HeLa and the knowledge of the situation really took off with Rebecca Skloot’s excellent best-selling book on the topic The Immortal Life of Henrietta Lacks. Since then the scientific community has become more aware of the debt that is owed to Henrietta and her family and recognition for what she has done for research has begun to get its due credit.

Shortly after the genomic data on HeLa cells was published, it was removed due to an outcry that once again the family had been left out of the loop on a decision which could potentially affect them. The data revealed that the HeLa cells were unusual in that they had 82 chromosomes rather than the usual 46 and since they are derived from cancer cells their genomes were abnormal by definition, however it is possible that some information could be extracted from the cells which could compromise the family’s privacy. It is an important issue in genetics: can someone publish their genome when it might compromise the privacy of their offspring? The case is clearer cut in a situation where a person did not give their consent for their genome to be published.

To right this wrong, the NIH recently announced that the family will now be consulted on all future uses of the HeLa genome. The family are proud of the achievements which Henrietta’s cells have assisted in, but were consistently frustrated by being left out of decisions made about the cells. This current agreement then provides the best of both worlds, the cells can continue to be used to further advance our knowledge of health and disease and the family will be included in the decisions which could affect their lives.

This story is a long and winding one and it is far from over, but it appears with this latest development that the remaining chapters will be more uplifting than those which came before.