Warning patients about fertility loss before cancer treatment was standard practice at Hopkins, and something Howard Jones says he and TeLinde did with every patient. In fact, a year and a half before Henrietta came to Hopkins for treatment, in a paper about hysterectomy, TeLinde wrote :
The psychic effects of hysterectomy, especially on the young, is considerable, and it should not be done without a thorough understanding on the part of the patient [who is] entitled to a simple explanation of the facts [including] loss of reproductive function.... (Skloot, 47)"
1. As I read that passage, images of informed consent lawsuits danced in my head; I felt like I would have been livid if I had not been consulted about my thoughts on potentially being infertile if I went through with a procedure. I think transparency in medicine is the best possible way to prevent both lawsuits and patient distrust. People seem not to trust doctors, and I can sort of see why--not everyone understands human physiology and how to diagnose or prescribe treatment for things, or the side effects they'll experience along with the drugs or other therapies they're prescribed. So, with informed consent laws, I feel like the distrust might be less now than it was before, but I still sort of feel as though there should be even more transparency--maybe a more in-depth explanation to patients of the science behind their therapies, and what to expect on a cellular/molecular level, and how that'll translate into the macro scale to treat their disease or condition, as well as making them feel more informed generally, and therefore more autonomous. Maybe it's the helplessness of having someone else tell you what to do with your own body; maybe it's the fact that people aren't sure what's happening in them, and thus aren't prepared to deal with it very well, but I think that whatever Henrietta Lacks was experiencing, she must have been frightened, and the doctor was probably just trying to spare her feelings (a potentially rude and condescending way to do it to presume she was n't that bright just because she was poor, black, and uneducated, but still, one can only hope it came from a benign intent).
2. I suppose this raises questions for me, if I really think about it. I didn't think much about that when I chose this passage, just thinking that it caused a really visceral reaction of outrage and that I was taken aback by how doctors distanced information from patients. How did they think they were helping in the long run by doing this? Didn't they think of how the patient would feel to discover that they were infertile, and wouldn't it have been something they would have wanted a chance to mull over beforehand if it were being done to them? What sort of information would they have given Henrietta Lacks if she had asked them directly what they were doing? Where would science be if they hadn't acted without her permission? Does that justify the fact that it was done?
"No one knew what happened between Henrietta and Crazy Joe, except that there were some dates and some kisses. But Henrietta and Day had been sharing a bedroom since she was four, so what happened next didn't surprise anyone: they started having children together. Their son Lawrance was born just months after Henrietta's fourteenth birthday; his sister Lucille Elsie Pleasant came along four years later. They were both born on the floor of the home-house like their father, grandmother, and grandfather before them.
People wouldn't use words like epilepsy, mental retardation, or neurosyphilis to describe Elsie's condition until years later. To the folks in Lacks Town, she was just simple. Touched. She came into the world so fast, Day hadn't even gotten back with the midwife when Elsie shot right out and hit her head on the floor. Everyone would say maybe that was what left her mind like an infant's (Skloot, 23)."
- I felt so awful after reading this passage. It made me think of my father’s brother, Brad, who was born in rural Minnesota (Brainerd—yes, Brainerd—why, God, Brainerd?), to a family which was not inbred like the Lackses, but which wasn’t close to any sort of up-to-date healthcare, especially pediatric. Uncle Brad was never diagnosed with Down Syndrome, but I’m sure he had it. It’s the family’s little secret—they mostly just downplayed the things that were wrong with him, acknowledging that he was ‘slow,’ but not getting him any kind of treatment, or putting him in classes which could have helped him acclimate to the world around him, and which could have met him on his level. As it was, he got left largely to his own devices, without much supervision, or support, from his parents (my grandparents), and he watched unbelievable amounts of television, never developed socially, and fell victim to the alcoholism which runs on my father’s side of the family after my Grandma Elsie (another visceral connection to Henrietta Lacks’s daughter’s story) died in 1999. He drank constantly, and my grandfather (whose will to live left when his wife died, though he lived another 9 years after) didn’t stop him, so it was only a matter of time before something terrible happened. I think he got a DWI and was court-ordered to join TeenChallenge, a program for Minnesotan teens (duh) and adults (not so duh—I was surprised to learn this, though I admit I didn’t know much about Teen Challenge to begin with before Uncle Brad had to join) to clean up their acts while receiving on-the-job training for blue-collar work, as well as providing them with housing that is always supervised and kept “clean.” Uncle Brad, whom I had never liked, got clean, made amends with the family over the years, and was apparently doing well, when he got sick. He had colon cancer, and was dead within about eight months of diagnosis. I think that if he had gotten the attention and special-needs services he needed, he could have lived a more happy, functional life, with a lot of structure and without the alcohol. I think he was primarily a victim of overworked, outnumbered parents (my grandparents had five children, and my grandfather worked three jobs to keep the family fed and clothed, which left my grandmother essentially alone to rear all five children, and care for him as well).
- My questions from this passage are: Would Elsie Lacks have been taken better care of at home if the Henrietta and Day had kept her there? Did she know she was different? Was her condition congenital as a result of inbreeding, or was it a result of head trauma at birth?
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