So-called minorities tend to have a tense relationship with the scientific/medical field in any society. And yes, this “tense” relationship almost always includes restricted access to good health care. Take a look at the United States right now. It doesn’t really matter where you stand on the debate on nationalized health care, it doesn’t take a dummy to realize that those well endowed with money are less likely to suffer from diabetes, heart disease, bad teeth, cancer, and most other common health problems. But that’s not all I mean when I say tense. There is an ever-present lack of trust between minorities and the health care industry. And this book by Rebecca Skloot tells one story that illustrates why through what happened with one African-American family in the 1950s.
When Henriette Lacks went into the gynecologist’s office at Johns Hopkins in 1951, she knew something was wrong. She should have gone earlier, but when you’re part of a group that has been systematically experimented on by the medical community (look into the Tuskegee Experiment, if you don’t know what I’m talking about), had bodies of your deceased relatives dug up and transported to medical facilities in barrels labeled “Turpentine” for scientific research, or heard stories all your life of people disappearing when they got too close to Johns Hopkins, you don’t really rush to get your yearly physical. By the time Henrietta made it there, the cancerous tumor in her cervix was pretty well established. Her doctors did what they could, gave her the best treatment offered to colored patients at that time, but really they knew there were only putting off the inevitable. She wasn’t going to make it. But of course, they didn’t tell her that until she was nearly dead. They also didn’t tell her that they took a sample of her cervical cells – cancerous and not – for further study. This was pretty routine procedure back then, so nobody thought much of it. In fact, everyone assumed that once her cells were taken to the lab, they would survive for a bit and die out, just like all other cells.
But they didn’t.
LONG after Henrietta Lacks died, her cancerous cervical cells, known has HeLa in the scientific community, were still being used to conduct research on the newest cancer medicine, antibiotics, HIV meds, you name it. In fact, HeLa cells are still being used today. Like, right now. Seriously – go into any lab right now and you will almost certainly find Henrietta’s cells being used in some experiment. And serious scientific breakthroughs are being made, people. Her family would be so proud. Except they had no idea what was going on for a very long time. Yup. Yeah. No one told them.
By the time the found out what was really going on with Henrietta’s cells, her children were well into their 50s, some were in and out of prison, and all of them were suffering from common health problems like diabetes, heart disease, and stroke. And not a one had health insurance. Their mother’s cells were solving health problems around the world and were making millions for people in the medical field, but they couldn’t afford a visit to their general physician. And the irony is not lost on them. Add to that a lack of any real scientific knowledge and you wouldn’t have a hard time understanding how much emotional turmoil, anger, and fear the Lacks family feels toward Johns Hopkins and the medical community at large.
This book is really hard to read because it serves as proof of how disposable certain people were considered. Are considered. I don’t know. It also brings to light a very important issue in today’s world: once, say, a tumor is removed from your body, do you have rights to it and any money from medicines scientists develop though experiments with it? If so, what’s to stop people from extorting exorbitant amounts of money from research scientists, making research with cells cost prohibitive? I’d hate to be part of the committee in Congress deciding this pickle.
Four out of Five coffees.