Saturday, May 6, 2017

Informed consent

She's now 4 months old looking very much like her father at this age except he had no chin dimple

my Christmas cactus is in bloom again
A welcome sight during these 2 days of cold, unrelenting rain and wind
I have provided him with his own feeder with orange slices and grape jelly, which keeps dissolving in this nasty weather. He prefers the hummingbird feeder

Since the weather has been so bad, I have started to watch TV. I watched the Oprah produced and acted story of Henrietta Lacks. She had died of a virulent strain of cervical cancer in the early 50s leaving 5 children to suffer an incompetent father and cruel step-mothers. Oprah played one of the surviving children.
Researchers at Johns Hopkins had been trying to grow cell cultures of human cancers unsuccessfully until they had a sample of Henrietta's cells. These grew and grew and still are used to develop anticancer drugs and vaccines, the so-called HeLa cells. She lives on through her cells. These cells are so virulent that they commonly cross contaminate other cultures grown any where near them. Back in the stone age of cancer research, the drugs we made were tested against a strain of leukemia cells, L1210, named after Linda, the leukemia patient. This puzzled me as our targets were solid tumors and leukemia is not a solid tumor. I don't think we used HeLa cells. Our drugs were not specific; they interfered with DNA replication of both the normal cells and the tumor cells. Today's cancer drugs are more finely targeted though the ones used on me were not.

Anyway, a huge point of the drama was that these cells were being sold and the Lacks family had not received one dime. Furthermore, no one had asked Henrietta for the use of her cells. Callous researchers would show up at the daughter's door demanding blood to test for markers without ever explaining their purpose. Only one modern day scientist was shown as anything but a cruel, calculating robot with disdain for the suffering of their patients. This irritated me.

So there was no informed consent but these days, this is how things would have been. Henrietta would have been asked to sign off on using her tissues as experimental material. I was asked to donate my tumor for science. When I asked if there was any benefit to me, I was told coldly that it may benefit future patients but not me specifically making me feel like a shit for asking. Henrietta still will have died a hideous death; her children still would have had miserable lives and they still would not have gotten one dime from Johns Hopkins. The acting was excellent and the story engaging.

Although informed consent would not have helped the Lacks family, it certainly would have helped the Tuskegee airmen who were studied long term for the effects of syphilis. They could have been treated but then the study would have been ruined. That was reprehensible.

1 comment:

Elephant's Child said...

I knew the story and might even watch the movie.
You are so right about the syphillis study. Reprehensible doesn't begin to cover that behaviour.


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