Ada Lovelace Day: let’s talk about Henrietta Lacks

Hi, everyone! It’s been pretty quiet here recently, as I’ve just started a new job, and I love it, but it also is taking most of my science energy. But I couldn’t skip today: today is Bad News Biology’s one-year “blogiversary” (blogaversary?) and another Ada Lovelace Day!

Instead of focusing on a particular woman who does science, which is the focus of what today is about, I want to take some time to recognize a woman who has become central to biology…and whose life story and whose legacy are partly why I incorporate ethics and human interest when I’m teaching…and why I write here.

Her name is Henrietta Lacks.

Henrietta-David-Lacks-1945
Henrietta Lacks, left, and her husband David, right. Picture provided to the public courtesy of the Lacks family. (Thank you, Lacks family, for sharing!)

I hope by now you’ve heard of her. Her story is becoming much better known to scientists and people in general. I don’t intend to say anything breathtakingly new here as much as I want to help Ms. Lacks’ story be heard by as many people as possible, and to do my normal thing of helping people who aren’t specialists in science get some help understanding the science that is part of her story. PLEASE check out the words of Ms. Lacks’ family, who are on Twitter as @LacksFamily and maintain a website at http://www.lacksfamily.net/. This is THEIR story, too, and their words are more important than mine here.

People I’ve worked with really, really recommend the book The Immortal Life of Henrietta Lacks, by Rebecca Skloot. I haven’t read the book yet, sadly, although it’s on my list (see also: new job). In doing some internet searching for this post, I came across some shareworthy blogs that talk about Ms. Lacks and the book: Aaliyah Marie’s chapter-by-chapter summary and review, Our Bodies, Our Blog, The Immortal Life of Henrietta Lacks Blog

Many of you know that a lot of scientists who study human biology use what are called immortalized cell lines, or just cell lines, for their work. The important concept behind this name is that you can isolate cells from a person’s body and keep them alive in the laboratory, outside of a human body. In a lot of ways, these are great: they let us do experiments on actual human cells and know whether a drug is likely to have a side effect, or to figure out if humans just have some biology that’s different from rats or other lab animals – without hurting or killing a person.

Ms. Lacks was the first person whose cells were isolated successfully. From the HeLa Foundation’s brief summary, doctors took a sample of the cancer she had and kept that sample alive in the lab, which they didn’t expect to do. But they didn’t ask her if they could do this, and they never told her, or her family, even after her death soon after, or after that HeLa cell line became used in thousands of research projects.

One reason I mention social justice here, or issues of discrimination or bias, is that who we are as people affects who we are as scientists, patients, and observers. Ms. Lacks was poor and she was black, and that meant something about how the society she lived in saw and treated her – and still means something today. (If you believe that racism has been eradicated from the United States, well, that’s not true. Have you heard about the disrespect and, frankly, mistreatment of science blogger DNLee, the Urban Scientist? Check out her response at YouTube.) The NNDB page about Ms. Lacks suggests that she saw the doctors she did because they were among the few in her area who saw black patients. (Read a report from Citypaper here.) Even today, it remains too true that people who have less money have less access to the best doctors and the best education.

And of course it’s nowhere near enough to say that Henrietta Lacks was poor and black – in too many ways, those are words that other people would apply to her, not what she might say about herself. She was a farmer and a homemaker. She was a sister and a wife and a mother. She was just one of those really nice people, from what her family tell us of her, and was generous and wanted to be helpful. I will also say that I am not black and I am a woman, and I am aware that that affects how I write about Ms. Lacks, in complicated ways (that not everyone will agree on). (Note: some of the links I’ve included here to give voice to who tells Ms. Lacks’ story, and how, are written for readers with more experience with social justice thinking and analysis, from both personal and professional perspectives.)

I recommend that you read this poem, “For Elsie Lacks,” by sheridf. And go read the stories of the Lacks family.

Henrietta Lacks historical marker; Clover, VA; 2013-07-14
Picture of a memorial sign describing Ms. Lacks’ life and legacy. Photo courtesy of user Emw via Wikimedia Commons; click picture for link to file

Dr. Brainiac’s two cents:
This part is my personal opinion ONLY.

One reason I write here is that I believe that all people have the right to understand how research science – medical, basic, agricultural, etc. – actually works. I want people to be in control of their own bodies when they visit their doctors, and to know when they sign up to be part of experiments what that could mean. I hope that it encourages people to participate in studies and in citizen science projects, fully aware of the risks and rewards.

I also want to be sure that scientists don’t forget that they were people before (and during and after) they became scientists. What happened with Ms. Lacks was wrong. Non-scientists can help us remember our humanity when we get caught up in our work, and can help us be honest and fair in that work. Sometimes this comes through decisions we all make as voters, by directly saying “yes” or “no” to a particular ballot issue or by electing representatives who set local, state, and federal laws. Sometimes this happens in other ways, like when non-scientist community members serve on the review boards that research institutions (including colleges and universities) use to make sure a project meets the ethical standards of the community.

Now, I should say that this is also a place where there is room for discussion. Should doctors be allowed to use cells or tissue samples that would otherwise be thrown away? What do patients need to know in those cases? What if the patients can’t be contacted, and nobody can find their families? What do patients need to know before agreeing to let their bodies be part of research? This blog post by Prof. PD Hopkins of Millsaps College helps illustrate even more complexities. I have my own opinions on this, but that doesn’t mean I’m right or know everything there is to know here. I just have this deep belief that this matters, and we all need to be part of it.

I am thrilled that scientists finally reached out to the Lacks family and got their permission to use Ms. Lacks’ cells. I am delighted that her family will help to determine what happens to her genetic and cellular legacy. It makes me hopeful for the future of science being fairer and more equitable, for all people.

Hela cells with adenovirus
Image is of HeLa cells, infected with adenovirus. Image courtesy of the National Cancer Institute, via Wikimedia Commons.

To learn more about Henrietta Lacks, check out:

The HeLa Foundation

The Henrietta Lacks YouTube channel

A post by Dr. C Spigner at blackpast.org

The NNDB page about Henrietta Lacks

Read the paper about HeLa cells from the journal Genes, Genomes, Genetics

…and read some commentaries on HeLa cells, their science, and scientific ethics:
”From Tissues to Genomes” by BM Knoppers

”Policy Uncertainty, Sequencing, and Cell Lines“ by T Caulfield and AL McGuire

”Building Trust in 21st Century Genomics” by MJ Szego, JA Buchanan, and SW Scherer

Read about the high school named for Henrietta Lacks from The Columbian

And some news releases from August 2013 about the HeLa genome, the agreement reached between the Lacks family and the NIH, and other breaking topics:

From CNN

From The Wall Street Journal

From USAToday

”A Family Consents to a Medical Gift, 62 Years Later” by Carl Zimmer at The New York Times (* I mention Dr. Zimmer by name because if you like this article, you should check out his blog!)

…and look for future posts here that I hope to write to help celebrate the birthday of Henrietta Lacks (August 1)!

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