Thinking about the immortal cells of Henrietta Lacks

21.34, Wednesday 27 Apr 2022

Who owns immortalised cell lines?

Henrietta Lacks (born Loretta Pleasant; August 1, 1920 – October 4, 1951) was an African-American woman whose cancer cells are the source of the HeLa cell line, the first immortalized human cell line and one of the most important cell lines in medical research. An immortalized cell line reproduces indefinitely under specific conditions, and the HeLa cell line continues to be a source of invaluable medical data to the present day.

Genetically identical HeLa cells are cloned and used, for example, to test whether some substance or another is carcinogenic.

HeLa has also been…

  • industrialised to make polio vaccine, used on the production line
  • hybridised with mouse cells, to create the first human-animal hybrids.

The human use of human beings, eh. Blimey.

Hey, BUT

A biopsy was taken of the carcinoma on her cervix but, as was common practice during the mid-20th century, the physicians involved did not obtain consent from Henrietta before carrying out this procedure.

Nor was consent given to use the cells for research, nor for turning the cells from the cancerous sample into an immortalised cell line. Not that consent was required, according to policy, in 1951.

Eventually the cell line was sequenced, and then identification was swift. From Wikipedia: In March 2013, researchers published the DNA sequence of the genome of a strain of HeLa cells. The Lacks family discovered this when the author Rebecca Skloot informed them.

Get this: the fight about ownership was about insurance premiums.

It was not until 2013 that the Lacks family were given any authority over the use of the HeLa cell line – over half a century after Henrietta’s cells were first used. This only occurred because of the publication of the HeLa genome sequence, which raised multiple concerns among the Lacks family; one of these was the possibility of the sequence being used to calculate the family’s risk of disease and the potential health insurance implications of this.

Looking up immortal cell lines on Ancestry.com is a thing now. I wonder how that plays with GDPR.

Conclusion: two Lacks family members are now on a six-person committee that regulates access to the genetic data.

Ownership:

Devil’s advocate… do we really have to treat the cell line taken from Henrietta Lacks (admittedly without consent) as her property?

Might it be like the monkey selfie property dispute? Just as the photographer created the necessary conditions, but still didn’t end up as the owner of the selfie, couldn’t you argue that Lacks created the necessary conditions for the cancerous cells, but ultimately doesn’t get to own the Act of God that occured?

How much independent agency do we ascribe to a tumour?

Precedent:

What if it wasn’t a genome that was taken but a connectome? Let’s say technology gets to the point where its possible to scan brains and run them in software, say for 20 seconds at a time, in crowds of a million in parallel, maybe to do rapid marketing surveys on AI-generated car adverts to figure out which creates the right emotive response and purchase reflex? It’s just software, right? Not the actual personality. But perhaps it’s just a little bit sentient. Who knows.

I guess if that comes to pass then it’s super important that we establish the legal precedent now that derivative works (such as a brain scan) are “owned” by the originating body.

But then – what if you sign away the rights because money while you’re alive is worth it? Maybe you shouldn’t be allowed to sell your own afterlife, to protect your eternity from the poor decisions made by your greedy original meat self.

It would be a weird post-death existence to wake up as looping goldfish-brained ad microtargeting engine sometime in the 2160s.

See you there I guess.


There is a sci-fi short about almost precisely this: Lena by qntm, which is written as a Wikipedia article.

This article is about the standard test brain image. For the original human, see Miguel Acevedo.

MMAcevedo (Mnemonic Map/Acevedo), also known as Miguel, is the earliest executable image of a human brain. …

100% worth your time. READ: Lena.

Thank you David Turner (@NovalisDMT) for finding this from my vague description!

If you enjoyed this post, please consider sharing it by email or on social media. Here’s the link. Thanks, —Matt.

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