I thought I'd start the FAQs with one of the most commonly asked questions: How did you learn about Henrietta and the HeLa cells, and why did they grab you the way they did? Here is the answer, which I also posted about over on Powells.com's book blog this last week as part of a little guest blogging stint:
I first learned about Henrietta Lacks in the late 80s, when I was 16 and sitting in a basic biology class at Portland Community College
(PCC). My teacher, Donald Defler, mentioned HeLa cells, saying they
were one of the most important tools in medicine, then almost as an
aside, he said, "They came from a woman named Henrietta Lacks, and she
was black." That was the moment I became obsessed with Henrietta. I
went up to Defler after class and started asking questions about
whether her family knew about the cells (they didn't) and what her race
had to do with them being alive, but he stopped me, saying no one knew
anything else about Henrietta, just her name and her race.
Defler, being the good biology teacher he was, suggested I do some
research to see if I could find any information about Henrietta Lacks.
"Write up a little summary of what you find and I'll give you some
extra credit," he told me. Several months ago, when I got the
pre-publication proofs of my book, I called Defler and (much to his
surprise) told him about how that moment in his biology class more than
20 years ago had started me on a path that ended with The Immortal Life. I sent him an advance copy and said, Here's my extra credit summary, Mr. Defler...it's a few decades late, but I
have a good excuse: the information was really hard to find ...
The scene of me learning about Henrietta Lacks for the first time in
my PCC classroom is in the prologue of the book (which you can read
online here). But what's not in the prologue is the backstory behind why Henrietta's story grabbed me.
The year I learned about Henrietta Lacks was the same year
my father got sick with a mysterious illness no one was able to
diagnose. He'd gone from being my very active and athletic dad to being
a man who had problems thinking, and he spent all of his time lying in
our living room because he couldn't walk. It turned out that a virus
had caused brain damage, and he eventually enrolled in an experimental
drug study (he's since written several books
about his experience living with brain damage). Since my father was too
sick to operate a car, I drove him to and from the hospital several
times a week and sat with him while he got treatments. I spent much of
my 16th year sitting in a hospital watching my father and other
patients be used as research subjects. In the midst
of that, when Defler mentioned that Henrietta's cells had been growing
in labs decades after her death, the first questions I asked were, Did she have any kids? How did they feel about her cells being used in research? I think I asked those questions in part because I was wrestling with the emotions associated with watching my father's
experience as a research subject.