An Evening with Rebecca Skloot

So this sounds a lot fancier than it was. I’d love to say I sat down one-on-one and picked her brain about what is arguably one of the mos successful book responses I’ve ever written for this blog. And we’re obviously besties, I mean Ms. Skloot favorited my “On the Blog” tweet this past year,

On the Blog July 5, 2012: "The Immortal Life of Henrietta Lacks" by @rebeccaskloot – http://t.co/zqp24yIYbh #CivilRights #Ethics #History

— Geoff Whaley (@geoff_whaley) July 5, 2015

but alas I didn’t get to sit down one-on one. However, I did get to attend a really cool talk as part of a Radcliffe Institute for Advanced Study of Harvard University lecture series: The Past, Present, and Future of DNA.

I first read The Immortal Life of Henrietta Lacks back in July of 2012, two years after its original publication and a year after it came out in paperback. Apparently this was far enough ahead of the curve that my response was the highest visited response on this site until recently. (Thanks Mr. Coehlo!) Not to be a hipster or anything, but yeah that.

When I found out about the lecture from my friend Martin, I jumped at the opportunity. I remembered really enjoying the book and I knew that it had become this cultural phenomenon through book groups and word of mouth. What I wasn’t expecting was how packed the auditorium was. I’m glad I got there as early as I did because not only was the main auditorium full, but the balcony and two over-flow rooms were as well! It was cool to see Radcliffe up-close and personal as I’ve only ever walked around/by it and never walked through the grounds, unlike the main Harvard campus.

This talk was less a book talk and more an academic discussion of the ethics and rights around cells and tissues using HeLa as the primary conduit. I found it incredibly interesting and enlightening not only from the literary perspective, but also from the bioethics and socio-cultural perspectives. Joining Ms. Skloot on the panel were from left to right, moderator Professor Paula Johnson, Ms. Skloot, Professor I. Glenn Cohen and Professor Evelyn Hammonds.

I found the talk to be incredibly enlightening and took pages of notes in my book journal. I can’t even begin to synthesis everything that they discussed but a few of the key points I found incredibly poignant were:

• “The Common Rule,” a law existing and currently under revision is a mess and will continue to be a mess because of the speed of science. (“Not only do we [the public] not know what rules and laws are proposed, but the language is indecipherable.”)
• A lot of people struggle with finding meaning between being biological forms and human beings. (I want to read more about this so need to look into Professor Hammond’s oeuvre to see what she’s explored.)
• No one really knows who owns tissues and what patients rights are towards them.
• Anonymity of cells/tissue samples is no longer feasible when someone, albeit highly specialized someones, could map the genome and find the person.
• Clinical science and research science are slowly nearing the same speed. And it seems any time something new comes along it appears to happen to the Lacks family first (see next bullet) and then a law or law revision is proposed.
• The overwhelming desire of the Lacks family to help better humanity even after going through all of this.
• Henrietta Lacks wasn’t the only person this has happened to! This was news to me, but not surprising when I thought about it. Ms. Skloot gave an example of a mother finding out her deceased son’s cells were used to better study and make advances in Cystic Fibrosis research.

In addition, I was thoroughly humored by Professor Johnson very kindly laying the smack-down on the first question of the Q&A session, which wasn’t a question but a statement. She basically said before we can even consider that we have to go back three-to-four steps to make sure they’re even included! Add in that Ms. Skloot politely also laid the smack-down on a student who asked about taking liberties in her book,

“Students often assume I took liberties, but I didn’t. That’s why it took me 11 years to write the book.”

And she proceeded to explain how she corroborated just the opening scene by doing meticulous research with archival photos, overlapping interviews and non-leading questions. It was fascinating to find out how much she put into it.

There was just so much to take in and appreciate that I can’t even really begin to touch on all of it. Mostly, I’m just happy to live in a city that has such amazing opportunities as this. I’m going to an art exhibit where I work on books later this week and I think I’m going to make more of an effort to go to an author reading/speaker series in the future like I did when I first moved to Boston.

Have you read the book? What did you think? This talk only made me want to know more information about bioethics and problems in science and technology.