The Immortal Life of Henrietta Lacks, the Sequel


HeLaFaceNYT

On March 11th scientists at EMBL announced that sequencing of HeLa cells revealed havoc in biology’s most-used human cell line. Their sequence analysis reveals how the HeLa genome is different to the Human Genome Project reference. Their results are published in G3: Genes, Genomes, Genetics.

Since HeLa cells are indeed one of biology’s most-used human cell lines, this is a great resource for cancer research.

But what about Henrietta?

But wait, … ‘HeLa’ stands for ‘Henrietta Lacks’. It’s not an anonymous cell line. There is a real person (plus still living family) behind it. What does the Lacks family say to having their family’s genome exposed?

Rebecca Skloot, author of The immortal life of Henrietta Lacks reports in the New York Times today:

The Lacks family is proud of HeLa’s contributions to society, and they don’t want to stop HeLa research. But they do want to learn about the HeLa genome — how it can be used for the good of science while still protecting the family’s privacy — so they can decide whether to consent to its publication. And they want researchers to acknowledge that HeLa cells are not anonymous and should be treated accordingly.

The EMBL researchers did not ask for consent and were not required to do so by law. But it would have been a courtesy and a smart move. Now they are the bad guys in a NYT article. Skloot is making a big point on genetic privacy and quotes a big shot:

As Francis S. Collins, director of the National Institutes of Health, says: “This latest HeLa situation really shows us that our policy is lagging years and maybe decades behind the science. It’s time to catch up.”

For Skloot the HeLa sequence shows how out-dated standard scientific practice is:

The publication of the HeLa genome without consent isn’t an example of a few researchers making a mistake. The whole system allowed it. Everyone involved followed standard practices. They presented their research at conferences and in a peer-reviewed journal. No one raised questions about consent.

And she is certainly right about one thing: with sequencing of whole genomes becoming easier and easier, questions of consent and genetic privacy will be more and more important.

What genetic privacy does a tumor have?

But the first question I had when reading her article is: How close is a cancer cell line (taken from a tumor and held over decades in cell culture) to the genomes of the donor’s family?

A few [scientists] argued that the cells had changed so much over time, they couldn’t accurately tell us anything about Lacks (to which a geneticist replied, “Your claim is so wrong that I don’t know where to start”).

Skloot (quoting some unnamed geneticist) is overly dismissive, as she generally is about science in her book. Tears take center stage, details don’t matter. If ‘The immortal life …’ actually explains what immortalization is, I must have missed that sentence. (It’s activated telomerase, as even Wikipedia can tell you.)

Actually the divergence and evolution of cultured HeLa cells was the main reason the EMBL researchers decided to sequence it:

[M]odern molecular genetic studies using HeLa cells are typically designed and analysed using the Human Genome Project reference. This, however, misrepresents the sequence chaos that characterises HeLa cells, since they were derived from a cervical tumour and have since been adapting in laboratories for decades. *

So how about Henrietta? The EMBL researchers write in their press release:

Comparisons to common genetic variants in human populations today allow one to infer variants likely to have been present in the donor’s genome, although such inferences can only be made with a certain likelihood. *

To me this is a cautious way to say that most probably the HeLa genome won’t tell us much about the Lacks family. But Skloot decided otherwise:

But that’s not true. And a few scientists decided to prove it. One uploaded HeLa’s genome to a public Web site called SNPedia, a Wikipedia-like site for translating genetic information. Minutes later, it produced a report full of personal information about Henrietta Lacks, and her family. (The scientist kept that report confidential, sharing it only with me.)

So how does she know this report on the HeLa genome is “full of personal information about Henrietta Lacks, and her family”? Just because “a few scientists” got some result from some webpage and won’t share it? This is a funny claim to make. What they got is most probably the personal information of an evolved version of Henrietta lack’s tumor.

There must be a way to raise awareness of privacy issues without dumbing down the science. Skloot hasn’t found it.

Florian

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3 thoughts on “The Immortal Life of Henrietta Lacks, the Sequel

  1. jshoyer says:

    Activated telomerase is in fact mentioned in the book. ‘Telomere’ is right there in the index.

    As you’ve probably seen, the original press release was the most egregious example of ‘dumbing down’, implying that absolutely nothing could be inferred about current Lacks family members.

    Any thoughts on how sequence data like this could be distributed to labs that pledge to keep them secure private? It’s way too late for anonymity, but it seems like security is a higher priority here than open science. Especially if someone attempts to current Lacks family members for comparison…

    • Thanks for that. I wrote an update on the telomeres: http://wp.me/p1WV42-12c

      Actually I hadn’t see the original press release, but found a link to a copy now. Just answering ‘No’ is indeed making it very (too!) simple. But the reasons they give seem valid to me: “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.”

      Security: I don’t work with HeLa cells but with large sample collections where we have SNP information (not complete genomes). They are stored at the European Genome-Phenome Archive (https://www.ebi.ac.uk/ega/) behind a ‘firewall’. You need to write an application and specify why you need this information for your project to get the genetic data. How secure that is in practice, I don’t know.

      Florian

  2. [...] all the clamor over sequencing the HeLa genome, Rebecca Skloot and her book ‘The immortal life of Henrietta Lacks‘ are making [...]

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