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The HeLa Cell Line Genome: A Spark To Light The Debate On The Ethics Of Personal Genomics

For the past six decades, HeLa cells have been vital to making groundbreaking research in science. Scientists have made countless passages from them and shipped them worldwide, but did not put much thought into how they originally established.

Scientific discovery and faith healing

Rebecca Skloot gave the cells a life and a history in her book ‘The Immortal Life Of Henrietta Lacks’. The book deals not just with the origin of the cells, but interweaves it with scientific discovery, faith healing and racial issues. This book brings to light many ethical issues that were neglected decades ago.

Kept in the dark

Skloot talks about how the Lacks’ were kept in the dark about the cells and how important and beneficial they were in moving science forward. Although the book was published a few years ago, it was only this year after the HeLa genome was sequenced.

A sequence published…

In mid-March this year, Lars Steinmetz and his group published the sequence of HeLa genome in G3: Genes, Genomes and Genetics online. The study was comparing the genome of HeLa cells to that of normal tissue.

…and withdrawn

This publication sparked a storm of ethical controversies which forced them withdraw the publication (although it has been reviewed and consequently re-published). This is also the first time a genome has been withdrawn from public access. The family stated that the genome sequence is private family information and it should not be published without consent. EMBL describes the genome to be chaotic, complex and fractured- more representative of a cancer genome than of the family itself. There seems to be more fire on the grill since consent was not received before establishing the cell line itself.

The ethical conundrum

In an article for the New York Times, Skloot points out that since the genome was published long after Henrietta’s time, consent should have been received from her family. While we all agree that patient’s consent is top priority while using samples or data for extending continuing research, having the family consent for them is a whole different ball game.

Turning the argument on its head

It turns the argument on its head and spurs questions like ‘Do my unborn children have the right to ban me from making my genome sequence open access?’ An ethical conundrum indeed! It is easy to argue that a genome sequence is private information and it would be up to the individual to make it available. However, what of the information the data would provide once a comparative mapping is performed?

Genomebook?!

Public understanding of human genome sequencing is limited- in part due the communication of science to non-experts. Having sequencing information available online makes it sound like Facebook only with a hundred times more coverage! This is not true. It is important to remember that most of the analysis that comes out of human genome sequencing is a ‘prediction’ with a percentage or a probability number associated with it until it manifests into a phenotype.

Your sequence here

It is important to remember the good that has come out from making sequences publicly available. Publicizing genomes may not be the first aspect that we think about when it comes to our own sequence. However, it opens up more resources and the chance of a remedy when data is available to other researchers.

Can of worms?

The can of worms that has been opened because of the HeLa Genome will hopefully help to establish policies regarding sequencing and publishing of human sequences. As we move a step further towards personalized medicine, it is important that such regulations are put into place, but we shouldn’t forget the direction we want personal genomics to take or how beneficial it could turn out to be.

Reference

Steinmetz et al., (2013) The Genomic and Transcriptomic Landscape of a HeLa Cell Line. Genes, Genomes, Genetics. March 11, 2013.

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