The Immortal Life of Henrietta Lacks

Today's post will be relatively short, because we're combining the review, the main body of the post, and the question of the week into a single monstrous Frankensteinian hybrid post this week!

Before we begin: This blog will be undergoing a few changes over the next few weeks, so keep a close eye on library.gallaudet.edu for any updates that will clear things up. I can't say much more about it right now, but when you hit a weird post, that's why.

Today, it's all about The Immortal Life of Henrietta Lacks by Rebecca Skloot.

It was selected as the Common Reading for campus this year, so I read the book a couple of months ago. It sticks out in my mind mostly because of the story, which is fairly unbelievable.

For the past sixty years or so, there's been a single cell culture underpinning virtually every major advance in medical technology, from the improvement of lab equipment to the polio vaccine. This cell culture is known as HeLa, and it is immortal. Given enough nutrients, it will double its population of cells every 24 hours, forever.

Or at least it has for the past sixty years, with no signs of stopping any time soon. It's been estimated that close to 50 million metric tons of HeLa cells have grown over the past six decades, enough for 100 Empire State Buildings. This cell line is descended from a single sample of cervical cancer cells taken from an African-American woman named Henrietta Lacks at Johns Hopkins University in 1951.

Unfortunately, almost nobody knew her name. Nobody knew who she was. Nobody knew she had a family, complete with a set of five children, some with hearing losses or outright deafness. The doctor who originally sampled her cells discovered their unique properties not long after she died, and gave them away. Some people took those cells, used them to learn how to mass-manufacture cell cultures, and sold more of those cells and made millions. Industries ranging from pharmaceuticals to cosmetic surgery grew from those cells, and they made first millions, then billions, for the people who started out by using those cells. Jonas Salk grew the polio vaccine in his own copies of those cells and saved millions of lives because of Henrietta Lacks, but nobody knew her name, and her family saw none of this money.

Her family didn't even know what their mother -- though long-dead -- was doing to the world until 20 years after she'd been buried, and even then, the truth only came out because they were unknowingly being used for medical research, a common theme in African-American history during the 20th Century.

Skloot weaves together a few strands in her exploration of the story of Henrietta Lacks, propelled in some ways by Henrietta's daughter, Deborah. She digs deep into the history of Henrietta's family, both ancestors and descendants; follows the path of the cells from Henrietta's womb to its first laboratory to its distribution around the country to the world we live in today; traces, in some ways, the history of the African-American community in the early part of the 20th Century; and explores many questions of medical ethics.

For example, Henrietta's cells were taken from her without her permission. They were distributed, used, manufactured, and sold without her family's knowledge or consent. Her name -- and thereby that of her family -- was revealed, again without any agreement on their part. Her descendants were sampled and experimented upon while being told a different story. The list of sins is lengthy.

In the face of all this, the reader has to ask the question: is all of this morally-questionable behavior justifiable in the light of all the good things that have resulted from Henrietta and her cells? As we move deeper into the 21st Century, the question of privacy becomes important, not just electronic but genetic. For example, if your appendix goes bad and you have it taken out, what happens to the appendix? Does it get thrown out, or is it kept because it's useful biological material? Is your name attached to it? Does that mean the DNA in your former appendix can be analyzed, your entire genome decoded, laid bare, and stored in a database so that complete strangers can know everything about you and your body?

The list of ethics questions that arise after you read this book is also lengthy, and it's chilling. Do you have the right to your own body parts after they've been detached from you?

In general, the book addresses a huge variety of issues, from race to God and back again. This is why the book was selected as the Common Reading; that Henrietta's descendants are also deaf brings a new dimension to our discussion and makes the book especially relevant for us here at Gallaudet University.

As the Common Reading this year, all First Year Experience students will be reading it, but several other departments are leaping into the fray as well, because The Immortal Life of Henrietta Lacks transgresses a large number of disciplinary boundaries in its quest for the truth. Because of the involvement of so many departments, it'll be a big fall semester!

A number of events are being planned, both for the Gallaudet campus community and for the outside community as well. I'll keep you posted on those as the schedules appear, but I hear there are fascinating activities on the docket, so keep an eye out. The Library will also make a LibGuide available about The Immortal Life of Henrietta Lacks and the various topics it touches upon; when it's completed, I'll let you all know!

Also, please bear in mind that this book is popular; the Library has two copies right now -- which is unusual for a non-deaf-related book -- and they've quite literally been checked out nonstop since the spring. Hopefully, we'll be able to catch one of our copies as it comes back in and place it on reserve so it's available for everyone to look at. If you're not familiar with where to find the reserve materials, ask at the Service Desk -- they're on the shelves behind it! Just remember: an item on reserve can only be checked out for 2 hours at a time, maximum, although it can be renewed if nobody else is asking for it. You also must stay in the Library while using it; we can't allow it to leave the building. This is how we guarantee it's available for everyone.

Truthfully, I'm excited; it's been a while since a book that wasn't Twilight was this popular, and this fall sounds awesome. I'm teaching an FYE class, and am looking forward to exploring all of its implications with my students and with other courses.

In the meantime, come back next week for another round of posts about what students and faculty -- both new and returning -- need to know!