HeLa Cell Line Genome Sequencing Raises Ethical/Privacy Concerns

HeLa, one of the most commonly used cell lines, got sequenced early this month. A team of German researchers sequenced the genome of He La cell line and published in the journal G3:Genes, Genomes, and Genetics.  The immortal cell line was created from Henrietta Lacks’ cancer cells and scientists across the world have been using to study human biology as it is easy to grow in a lab.

HeLa Cell

HeLa Cell Karyotype (Image: G3 paper)

It is widely known that HeLa cells, like other cell lines derived from cancer cells, is very different from normal cell and has numerous chromosomal aberrations like extra copies of multiple chromosomes. However, till now the genome was not fully characterized. The German team sequenced the HeLa cell genome and identified single nucleotide variants (SNVs), structural variants (SVs), and copy number variations (CNV) across the human genome. They also sequenced the transcriptome of HeLa by using RNA-seq.

Although the availability of HeLa cell genome is a great resource for the researchers using HeLa cells, sequencing the HeLa cell without the permission of Henrietta Lacks’ family members has raised ethical and privacy concerns.

EMBL’s press release announcing the HeLa cell genome sequencing emphatically said nothing about Henrietta Lacks or her descendents could be learned from the HeLa cell sequencing as the HeLa cell has undergone lots of changes for over the 60 years and said in its FAQ,

Can we infer anything about Henrietta Lacks or her descendants from this sequencing?

No, we cannot infer anything about Henrietta Lacks’ genome, or of her descendants, from the data generated in this study. Firstly, the subtype of HeLa cells sequenced in this study has spent decades in labs, dividing and thus undergoing mutations and changes – they are very different from the original cells that started growing in 1951. Secondly, these initial HeLa cells were taken from Henrietta Lacks’ cervical cancer tumour – as cancer is a disease of the genome, the DNA of cancer cells is usually different to that of the patient. Without any genetic information from the original tumour or from Henrietta Lacks, it is impossible to distinguish which parts of the genome sequenced here originate from Mrs. Lacks, her tumour, or laboratory adaptation. The goal of this study was not to gain insights into Henrietta Lacks’ cancer or personal biology, but rather to provide a resource for researchers using HeLa cells.

On the contrary, a lot could be learned from the HeLa cell sequence data about the descendents of Henrietta Lacks.  And the lack of understanding of the implications of publishing genetic data, immediately triggered responses from many experts on twitter.

 

 

It is also worth noting that this is not the only study that revealed genetic data of HeLa cell.  Numerous studies have genotyped HeLa cell and done other types of sequencing like RNA-seq and Chip-Seq before this.  Here is the link to the conversation on twitter storified by @phylogenomics.

[Update]

Since the post was published, NY Times had an article The Immortal Life of Henrietta Lacks, the Sequel by Rebecca Skloot (whose book brought Henrietta Lacks in to limelight and addressed many ethical concerns), EMBL updated its FAQ on the privacy issues on publishing HeLa Cell genome sequence, Micheal Eisen wrote a blog post on the NY Times piece “The Immortal Consenting of Henrietta Lacks”. Follow the comment section at the blog post for the interesting conversation.

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