February 16, 2011

Weird Science

Her name was Henrietta Lacks.

She is known to most scientists simply as HeLa. In fact, she's known on an even simpler scale: she is not a person to most modern researchers, rather, she is an "immortal" line of cultured cells. The immortality was that these cells, named HeLa cells, were extremely resilient when grown in culture, becoming the first human cells to be successfully grown in a lab.

Henrietta had an aggressive form of cervical cancer that ultimately killed her in 1951. Prior to her death, cancerous cells from her tumor were taken without her permission and used for scientific research at Johns Hopkins. Informed consent didn't exist at the time. The horrible irony of all this is that Henrietta left behind five young children who would grow up without their mother... and without health insurance. The Lacks' children would never be able to collect a dime from her mother's contribution (one made without her consent, no less). HeLa cells have helped millions of people globablly, from testing cancer therapies to the creation of the polio vaccine, as well as thousands of other studies.

You might see where I'm going with this whole "cells in a petri dish" tangent: HeLa cells helped pave the way for IVF.

The examining gynecologist, Dr. Howard Jones, first witnessed and diagnosed Henrietta's unusually large and aggressive cervical cancer tumor. He would leave Johns Hopkins in the 1970s with his wife Georgeanna, an endocrinologist, to form a reproductive research center in Virginia. The pair would go on to successfully pioneer IVF in the United States. And all because of the knowledge they gained from seeing HeLa cells in action.

Dr. Howard W. Jones, IVF pioneer.
This post was set up to be just another run of the mill book review as I read Rebecca Skloot's compelling account of Henrietta's life and the far-reaching impact of HeLa cells in the last 60 years. It was when I had finished the book and read the "Where are they now" section on the cast of characters in the story that I saw that Dr. Howard Jones was the doctor responsible for the first successful IVF pregnancy in the United States. That's when I realized the weird connection I had with Dr. Jones.

We both received Hope Awards at RESOLVE's Night of Hope this past September.

Dr. Jones received the Barbara Eck Founders Award for his work with his wife in the field of reproductive science. While Dr. Jones could not personally attend (he just turned 100 in December), the award was accepted on his behalf by his grandson. For a video of Dr. Jones at his 100th birthday, check this out from the ASRM: Dr. Howard Jones speaks about IVF in the 21st century.

There's a very powerful line in the book, from one of Henrietta's children, to the effect of, "I don't care if millions of people have benefited from my mother's cells... I just want my mother back." It was not an easy life for Henrietta's children in the wake of her death, as described in the book.

What hit me was realizing that I will be one of those people benefited. IVF wouldn't even be a possibility if it weren't for some borderline shady medical practices in the 1950s surrounding the collection and distribution of HeLa cells. I don't feel guilty for having benefited from this research. However, I do now have an appreciation of and watchful wariness for the bioethical considerations of scientific research. We are lucky to live in an age of informed consent, but that still doesn't mean you have control over your tissues once they leave your body, whether it's for research or even profit from that research. Just ask John Moore. You do however, have rights to your tissue before it leaves your body, like Ted Slavin.

All this talk of tissue and cells before and after they leave your body... kind of reminds me of the complexities inherent to using donor gametes. After reading The Immortal Life of Henrietta Lacks, this is the first time I've ever really thought about donor egg/IVF from a very removed standpoint, without the context of all the very personal considerations: "Will my child look like me or us? Will I still feel connected to my child?" I'm more than aware of the need for laywers in the donor egg process but I think this is the first time it's really sunk in. I'm not saying legal consultation is a bad thing, rather, I really understand now that all involved parties, recipient and donor alike, each have legal rights. I hate to say that it's about ownership, but at the end of the day, we're talking about human cells and the property rights to those cells once they leave a woman's body.

I'm reminded too of a session on embryo donation I went to at RESOLVE of New England's Annual Conference last year. On one hand, it could be very easy to check off "donate my unused embryos to science." You're simply relenquishing your property rights to those cells. On the other hand (and this is painting the picture with a very broad brush stroke) it's like sending your potential children off to the lab. It's a lot to consider. Again, it's just the ways in which this book has broadened my thinking about modern reproductive science.

If you've read the book, I'd love to hear your thoughts in the comments. If you haven't read it, go pick up a copy. It's a pretty quick read because honestly, it's so compelling you can't put it down. And I'll throw this question out there too:

Is anyone else just as marveled as I am at the miracles of modern science?

I mean, creating human embryos outside of the human body, implanting them into a waiting womb and if all goes well... it could be your child?! Mindblowing stuff when you really think about it.

7 comments:

Julie said...

i SO want to read this book. i had put it on my christmas list but no one gave it to me. i had suggested it to my book club, but no one but me thought it was a must-read. maybe i need to head to the book store this evening...

Anonymous said...

Awesome stuff! It's going on my Amazon wish list immediately. :D And, yes...my mind is officially blown at the possibility of IVF...miraculous!

Kir said...

since I have twins due to IVF, yes it blows my mind regularly. I will read the book soon, next on my NOOK. I am looking forward to hearing the story.

it's truly an out of body experience, that we have come so far and that IVF was begun because someone's life was over.
WOW.

Elana Kahn said...

I'm amazed every time I look at the picture of my twins as embryos. I'm like "those are my kids...the ones who are running around chatting up a storm". It's incredible.

Shorty said...

An excellent review and now i really want to read this book!

Anonymous said...

My husband and I went through IUIs, IVF & FETs at the Jones Institute. My doctors said he still came in regularly. I'll definitely have to give this book a read!

Delenn said...

I am currently reading this book and it is an awesome account!