Friday, August 09, 2013

Someone's probably getting ripped off now.

Article in the NYTimes about Henrietta Lack's family, with some help, shaming the NIH into giving them a couple of sinecures:
The Lacks family and the N.I.H. settled on an agreement: the data from both studies should be stored in the institutes’ database of genotypes and phenotypes. Researchers who want to use the data can apply for access and will have to submit annual reports about their research. A so-called HeLa Genome Data Access working group at the N.I.H. will review the applications. Two members of the Lacks family will be members. The agreement does not provide the Lacks family with proceeds from any commercial products that may be developed from research on the HeLa genome.  
None of this is about the Lacks though. Look at what's missing in the article. Here's the opening paragraph:
Henrietta Lacks was only 31 when she died of cervical cancer in 1951 in a Baltimore hospital. Not long before her death, doctors removed some of her tumor cells. They later discovered that the cells could thrive in a lab, a feat no human cells had achieved before.
Pay attention to the phrasing. It says "...doctors removed some of her tumor cells. They later discovered that the cells could thrive in a lab, a feat no human cells had achieved before." The implication is clearly that there is something special about Lacks' cells since they were able to thrive where no cells had thrived before. The article needs this to setup the legitimacy of the Lacks family grievance, which then lead to... but I'm skipping ahead.

Cancer is a million diseases all with the same result: the effected cell becomes immortal. Lacks' cervical cancer cells were not special in any way save that the normal apoptosis process had ceased to function, and therefore the cells would grow uncontrollably and (tragically) kill her. What was special about Lacks' cells was not the cells themselves, but that they were the first human cell line to find itself in a cell culture that worked instead of the Baltimore hospital's incinerator. This is not the story of Henrietta's special cells, this is the story of George Otto Gey's brilliant medical discovery.

Gey chose not to try and personally benefit from his breakthrough -- he gave the cell line, plus the formula for the culture -- to humanity and it's been the model for human mammalian cells ever since. But writing about the brilliance and magnanimity of scientists like Gey has fallen out of favor at the Times as it pursues other political ends.

The Lacks family sounds like a lower-middle class African American Baltimore family, and it's hard to imagine what they're going to be doing sitting around a conference table with a bunch of Government PhD and MDs going into the nitty gritty of genomics, recombinant biochemistry, and what privacy and ethical concerns should be debated before sharing "The haplotype-resolved genome and epigenome of the aneuploid HeLa cancer cell line." They're going to be told what to think. The article paints them as heroes, while some of the commentators say they are villains, but personally I think they're getting caught up in someone else's career ambitions. I also could not find who else would be on the new Access Group along with Lacks' relatives.


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