Book Report

Despite feeling like I have a lot of "assigned reading" on my plate about the baby-related adventures to come, like childbirth and caring for a newborn, I am persistent in leisure reading. Those days of just reading for pleasure are probably numbered anyway.

I just finished The Immortal Life of Henrietta Lacks, the story of an African-American Baltimore woman treated for cancer at Johns Hopkins in the 1950s. During her treatment, doctors took cell samples that later became an essential research tool. Without her or her family's knowledge, researchers grew her cells and sent them to research labs worldwide to investigate treatments for cancer and diseases like HIV.

The book explores what kinds of consent should be involved in research today, and how the racial dynamics of the 1950s played into keeping the Lacks' family unaware of their mother's contribution to science for years. While they struggle to pay for their own healthcare, companies have made millions copying and celling their family's cells.

This is another book (like Katherine Stockett's The Help) that I read and find myself embarrassingly surprised by the pervasive impact of racism years ago. The book notes that Johns Hopkins' hospital wards were segregated, blood donations from African Americans were marked "colored" to make sure blood between whites and blacks didn't mix. Medical chart audits reveal that African American patients typically received less medication for pain. And no wonder that an African American woman didn't argue or question her doctors when they were taking samples and initiating treatments. (Henrietta Lacks died of the cancer, though her cells still live today.)

It's an non-fiction story that reads like a novel and brings up a lot of questions like, "How come taking samples from a dead body requires a family's consent, but even today the blood you give for testing at a hospital can be later used for research, without your even knowing it?" If you believe that sample is going to be used by an altruistic academic researcher to cure disease, you may willingly give it up, but what if you later learn that the institution or researcher has made millions based on what your cells told them? And you can't afford to go to the dentist?

Reading the story is timely as one of the decisions Jason and I have to make is whether to save our baby's cord blood, or to donate or trash it. It's believed that banked cord blood may someday be useful in curing diseases, though the science is young and the costs for harvest and annual storage are pretty steep. We're inclined to donating it to a public bank, so it might help someone who needs it today, rather than the possible (maybe unlikely) need we'll have for it later. But what if the donation ends up in research? Initially I'd say that's good, I'd like to feel like we are advancing cures, but after reading this book I wonder, "what if the drug it helps develop later costs us thousands?" A really interesting question for someone who also works for a pharmaceutical company!

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