[conspire] Henrietta Lacks

[Nick Moffitt]

On 04Aug2020 07:00pm (-0700), Rick Moen wrote:
> This is coolness.  Poor Henrietta Lacks, killed by cervical cancer but
> able to be post-mortem _immortal_ -- literally -- through her vitally
> important cancer cells, deserves more lasting gratitude than just every
> first-year medical student knowing by name about the HeLa cell line.  
> 
> The frequently expressed opinion that her family deserved, dunno,
> royalties?, for the cell line seems more than a bit odd, however.

Every time I've come across this story over the past 20-30 years, I've been left with a sense that the real harm done was the poor communication with the family.  Science outreach is better now than it was at the time, but there are still a lot of problems you're going to encounter with researchers speaking to the public, particularly reaching out to a group that does not share most of your educational experience.

It was recorded pretty early on that the clumsy and arrogant communication from the scientists who initially reached out to the family led to a rumour that "Henrietta is alive, and they're keeping her in a cell."  The fact that they could not clear this confusion up quickly and compassionately is what did the greatest harm to the family over the years.  

First-year medical students had a better view of the problems in this story than the family themselves for many years, and all this would have taken is some PBS-level public-history-of-science presentation early on that explained "When Hooke first looked into a microscope at tiny pieces of plants and animals, he saw tiny structures that he thought looked like the rooms in a monastery, so he named them 'cells'."