#the immortal life of Henrietta lacks

[impulsivedecisionsat3am]

man i’ve been procrastinating reading my book for so long i forgot what an interesting book it actually is

[dr-whoopsie-daisy]

I started reading The Immortal Life of Henrietta Lacks months ago and had to step away for a while because someone I know was diagnosed with ovarian cancer.

I picked up the book again today. I got to chapter 27 where a German virologist discovered the cause of cervical cancer was HPV-18 and HPV-16 (90% of cases) and how studying Henrietta Lacks' cells lead to the HPV vaccine.

I just received my last HPV vaccine (it's a 3 injection series over 6ish month) a few days ago.

It feels very strange to be so connected to this book. I'm a patient actively benefiting from research done on her cell line. I'm also a doctor who had informed consent drilled into my brain from day one. Not just informed consent but making sure the patient *understands* their rights to information, the diagnosis, treatment options, the ability to refuse any and all treatments, the right to a second opinion. On and on.

Page after page of this book is laying out patient privacy violations, broken ethics, a lack of record keeping, and complete disregard for the next of kin. That's the point though, all of this was legal from the beginning until the 80's and 90's in America.

It's a lot to grapple with. Research doctors injecting patients with cancer cells, taking blood from the Lacks family but never bothering to tell them why. The millions of dollars made from cultivating her cells.

I don't understand why this wasn't required reading for any of my classes for my biology degree, my medical ethics minor, or at any point in my doctoral program.

Informed consent was taught as the forgone conclusion but in reality had only been enforced federally for medicine and research for 30-40 years before I started my doctorate.

Many of my professors were old enough to have been in research programs before these laws were written.

[hoorayiread]

The Ethics of Learning Ethics

I want to be a good person. I want to positively contribute to the world and encourage others to do the same. I also just want to know what the world is like outside of myself. Thus, I read nonfiction.

A few years ago, I read The Immortal Life of Henrietta Lacks by Rebecca Skloot. It's a book that discusses the ethical issues that have cropped up again and again in the advancement of modern medicine, and it is full of great information. However, it's main premise revolves around the story of Henrietta Lacks, a Black woman whose cancer cells were cultured without her consent. This line of cells has led to numerous scientific advancements that have generated millions, if not billions of dollars for research companies while the Lacks family lived in poverty. The book then goes on to research that family, obtaining interviews and even befriending some of the family members. And Skloot talks about how awful it was that Henrietta was exploited in that way.

Then Skloot proceeded to not pay the family. She admits this in her book. She gives some kind of justification for it, but it's been bothering me ever since I read it.

(Robin Tynan wrote an article for Medium titled "Your unconsious bias is showing-- a critique of 'The Immortal Life of Henrietta Lacks' by Rebecca Skloot," if you want more info)

Currently, I am reading Evicted: Poverty and Profit in the American City by Matthew Desmond. Coincidentally, I came accross a video from Gene Lee on Tiktok, where he mentioned that very same book. He mentioned it in passing while criticising how academics are often very sheltered from the consequences and lived experiences of everyday poverty. After this, I decided to look for articles that took a more critical look at Evicted to see if I couldn't find a more well-rounded look at the issues it tackles, but the only ones I found came from landlord websites and people that felt poverty was an individual matter rather than a systemic issue (I found a right-wing website that blamed poverty on unwed mothers. Do you care if I don't cite that source?).

One issue I think I'm facing is a lot of this information I'm finding comes from white people (Gene Lee is Black, but every other person I've mentioned has been white. And I am, too). I need a diversity of sources but, hey, what would you know? Systemic racism exists! I do have some authors of color coming up on my to-read list, including another non-fiction book written by a Black woman, but still.

Then again, one cannot fix the world by reading books alone in their room.

[frostedmeats]

You think anyone in my age group doesn't know what the mitochondria is???

[proceduralbob]

Sonny had a quintuple bypass in 2003, when he was fifty-six years old—the last thing he remembered before falling unconscious under the anesthesia was a doctor standing over him saying his mother’s cells were one of the most important things that had ever happened to medicine. Sonny woke up more than $125,000 in debt because he didn’t have health insurance to cover the surgery.

The Immortal Life of Henrietta Lacks, Rebecca Skloot

[yyyyanyan]

Book Club: The Immortal Life of Henrietta Lacks by Rebecca Skloot

not many thoughts but dang it was crazy to read about how much @_@ stuff about like lack of informed consent and/or lack of consent entirely. Super approachable to someone with minimal knowledge of all the cell stuff and with lots of context. Also really really appreciated how much it humanized Henrietta and the rest of her family.

[thatwritererinoriordan]

Finally, a little justice for the family of Henrietta Lacks

[watermelinoe]

reading really does make you calm down

[thechanelmuse]

My Book Review

"There isn't a person alive who hasn't benefited from my mother's cells." I read this book almost 2 months ago. Nineteen books later, The Immortal Life of Henrietta Lacks is still embedded and fresh in my brain. Still feeling a range of emotions because of the subject matter, Henrietta’s back story, the branch of stories within the main rooted story that highlights her children, the absolute rare and unique nature of Henrietta’s cells, and the voice of Deborah Lacks. This book could've only been told this way.

I've known about Henrietta Lacks and her unforgettable family for years, but kept putting this book off for obvious reasons. Hauntingly unsettling. Just one of many pages within the medical exploitation of Black Americans. Henrietta's stolen cellular language speaks in the form of indefinite replication outside of the body as the sole provider used in cure and treatment discovery that impacts the world. She existed before I was born and she'll continue to exist after we all pass on. How can something be traumatizing, infuriating, and fascinating all at the same time...

[flintandpyrite]

I’ve decided to read a different medical nonfiction each rotation this year. So far I have read:

When Breath Becomes Air by Paul Kalanithi—terribly sad and beautifully written meditation on death by a young resident who is dying of lung cancer. This was really worth reading and I’m glad I did, but man. Heavy.

Strangers to Ourselves, by Rachel Aviv—recommended by my psychiatrist SIL, this is an exploration of psychiatry as a field and its often sordid and cruel history. Really well written and eye-opening.

Up next I have Complications by Atul Gawande. I’m also contemplating Attending by Ronald Epstein, Being Mortal (also by Gawande), The Song of the Cell by Siddhartha Mukherjee and Administrations of Lunacy by Mab Segrest. But if you have favorites, let me know!

[shiveringsoldier]

This is such a big victory and something that should have happened a long time ago. I’m so glad that her family is finally being compensated

[bornafter1993]

i’m just thinking.. why tf did my high school make us choose between Speak and The Outsiders for freshman summer reading..

[psychicwound]

thinking abt henrietta lacks

[styafiya-blog]

What questions about your life are you Struggling From a Ghetto Mindset

Questions about your life and who you are when someone interview you that typically question asks born in a poor family and grow up amazing America many traditional way from the island's culture mentained in carribeain America children because when island people have children in America they pass on back home knowledge I learned that from my fiends experience with my own family people from every culture established different types of behaviors because of there roots some of they don't listen to the music mother and father used did I notice many of them will stick to the cooking dressing if they are from religious family they will sticks it and pass it on to there America children a young carribeain youth they arrived in United States to start their lives all over again in the education system when he go to schools sometimes the child that born in carribeain America family becomes she or she best friends.

This article explores some often overlooked facts I took a little time to investigate on my own. Many traditional Caribbean families become Americanized. Sometimes I have to check myself to see where I am coming from, what I must do and not do, and not every action speed I take part in. People tell me I am old school. Not every human behavior exists in the world. Holding on to your roots from the inside out is very important. You can adopt other cultures' lifestyles, and you also remember letting go of your traditional culture and forgetting who you are. Every generation from all cultures has different types of thinking. The poor experience mother and father have back in their country, and they know the way that sad process of poverty in Caribbean America affects children, is the real backbone of poverty characterized by changing between me and you. Many of them received higher education and stuck with students alone, just as all races of American decoration are independent