Rebecca Skloot follows the story of Henrietta Lacks, a Black woman in the 50s whose cervical cells were taken without her consent. While her cells (known as hela cells) became famous in science, heralding many important scientific and drug discoveries, Henrietta died of cancer and her family lived in poverty even as her cells made millions of dollars for pharmacological companies. The writing is well researched and easy to follow. I learned a lot about the medical malpractices that were common in America for the last century as well.

The book is about the story of Henrietta’s family as much as it is about the scientific journey of the hela cells. It is also about the exploitation of Black bodies by white people throughout the history of White America. I did have some concerns about the fact that the author of this book is also a White woman, who is very extractive with the (Black) Lacks family to get the story from Debra and others. I couldn’t find any information on this, but I do hope the family was able to get compensation from the profits of this book.

My unfiltered notes

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Beginning

• They started radiation treatment on her to treat cervical cancer without telling her that it might make her lose her fertility
• Also they took her cancer and normal cervical cells without telling her

Chapter 6

• The author calls Debra, who is Henrietta’s last remaining daughter, and writes down what she says. WAS THERE CONSENT BEFOREHAND TO TAKE HER STORY INTO THIS WHITE WOMAN’s BOOK?
• She calls Day, Henrietta’s husband. “The only time white people called Day was when they wanted something having to do with Hela cells”

Chapter 7

• Carrell — French scientist who made first immortal chicken heart beat in a culture. He was huge eugencist and wanted to use his science for organ transplants for white people, while euthanizing poor people and POC. he liked hitler. He also wanted to fix and “error” in the US constitution about equality of people - “the feeble minded and the man of genius should not be equal before the law”
• Turns out Carrell kept feeding the culture with living cells to keep it alive LOLOL
• Carrell was before Henrietta.

Chapter 12

• Henrietta dies bc lots of cancer. Her HeLa cells are famous and doctor takes a lot of autopsy to take her organs and shit for science. Meanwhile her husband flies her home in a pine box bc it’s all he can afford.

Chapter 13

• A bunch of black scientists and workers are recruited to donate blood to work on making sure Salk’s polio vaccine works. HeLa cells are instrumental for this effort. This is done at Tuskegee Institute at the same time the infamous Tuskegee Syphillis trial is being done to African Americans
• Henrietta’s cells help launch virology; methods for freezing cells; testing effect of radiology; used instead of animal testing
• Lol reporters wanna make Henrietta’s name public for everyone to know ugh. An article mis-calls her Helen Lakes lol

Chapter 15

• After Henrietta dies, Day works two jobs and is not with the kids. Ethyl mistreats the Lacks children, not feeding them or beating them a shit ton. UGHHH
• Ethyl sleeps with Day. Ethyl’s husband Galin molests 10 year old Debra (Henrietta’s baby daughter)
• Debra is molested a lot but Babette, her sister in law, convinces her to stay in school and not let her cousins have their way with her

Chapter 16

• Historically there were black and white Lacks (all related from white slave owner with “black mistresses”) but by the 1980s things are so segregated that neither white Lacks or Black Lacks know about the other or admit the slave owners raped the slaves

Chapter 17

• Omg this researcher named Southam injects Henrietta’s cancer cells into cancer patients to make tumors appear. That’s fucked. Then to test on healthy patients he asks for “cancer research volunteers” from people in the penitentiary. The healthy people were able to reject cancer!
• Apparently Nuremberg Codes recommend not experimenting on humans (after Nazis) but most doctors aren’t taught this in medical school. And Southam claims he didn’t know about it
• But for Southam, injecting cancer cells without patients informed consent — this is violation of human rights
• He is eventually given a stern warning and give them one year probation. But like Southam still flourishes professionally and is eventually elected president of American Association for Cancer Research
• But after this NIH requires IRB review board
• Somatic cell fusion — cell sex (body cells not sex cells). Like fusing HeLa with chicken cells or with mouse cells. That’s kinda weird. But fusing cells is used to map genetic traits to certain chromosomes.

Chapter 19

• Debra gets pregnant at 16 but Babette makes her finish school.
• Omg she suffers a lot. Her younger brother joe is abused and suffers a lot
• The entire Lacks family is poor and suffers a lot as the science industry makes so much money off of the HeLa cells

Chapter 20

• HeLa bomb - many cell cultures are contaminated by HeLa cells

Chapter 21

• The author finally meets the Lacks family. And they’re all so tired to speaking to white people about Henrietta but getting literally nothing in return, not even a postcard. UGH
• “Night doctors” — from 1800s, white people tell tales to black slaves that ghosts will do experiments on the black people. The white people go around in white sheets to act like ghosts. This eventually becomes KKK???!
• But many doctors also tested drugs on slaves and operated on them without anesthesia. Black bodies (exhumed corpuses) from the south often used for anatomy classes in med school in “barrels labeled turpentine”
• John’s Hopkins - black residents think the hospital was built to experiment on black people. Hospital was originally built by John’s Hopkins after he died, with the intention of helping poor black children. BUT researchers at the hospital have done shady shit. Like one researcher from 1969 who collected blood samples from many poor neighborhood children without consent to see if there was a “genetic predisposition for criminal behavior”
• The worst story for John’s Hopkins is of Henrietta Lacks - a black woman whose body was exploited by white scientists
• “She the most important person in the world and her family living in poverty. If our mother’s so important to science, why can’t we get health insurance?” Day has prostrate cancer. The Lackses have arthritis, bad heart, osteoporosis, high blood pressure, diabetes …
• Everyone says Henrietta donates her cells but that is a lie. “They took them, and didn’t ask” …… Dr. guy never told the family ANYTHING

Chapter 22

• Omg bc Henrietta’s cells are contaminating other cells they’re like, let’s get DNA from Henrietta’s family to figure out which cells are actually from Henrietta. UGH. so they did. They want to test Henrietta’s children to test the genetic markers.
• A Chinese post doc comes to draw blood but not only do they all have strong accents, Day had only gone to school for four years and never learned science, so he had no idea what they were talking about with cells and genetic markers :((((

Chapter 23

• The doctors just take blood samples without explaining anything to the family
• Guy and John’s Hopkins gave away HeLa cells for free and didn’t make money off of it. But the biomedical places they sold to DID sell and make lots of profit

Chapter 25

• John Moore working in Alaska pipeline. Has spleen leukemia. Doctor Gold takes his spleen then for years after keeps taking semen/blood/bone marrow samples …doctor created Mo Cell Line, selling Moore’s cells and patenting cell lines … very dehumanizing. He becomes first guy to sue and say patient tissue is patient property
• Supreme Court rules that your cells are not your property once you leave them in the doctors office. Doctors just need to get consent and share potential financial outcomes
• Scientists win basically.

Chapter 26

• Omg people publish Henrietta’s medical records without the family’s consent or even knowledge
• Patient information not kept confidential …..
• “The dead have no right to privacy, even if part of them are still alive”

Chapter 27

• HeLa cells having separate evolution from human cells — separate species? HeLa cells not genetically related to Henrietta anymore? Researchers saying HeLa cells aren’t human anymore.

Chapter 28

• They make a Henrietta Lacks museum but the family is like okay that’s great but do we get money? Or at least pay for medical bills?
• But at least it was an effort to honor Henrietta
• Cofield - a scam lawyer and doctor that pretends to help Lackses by suing John’s Hopkins
• The scam got so ridiculous that all efforts to honor Henrietta and stuff got halted
• Debra’s health suffers so much bc of the lawsuit and reading her mothers medical record and everything

Chapter 29

• Then author of this book comes snooping around and Debra doesn’t want to talk to anyone until there’s promise of monetary compensation on paper. She’s so hurt. All she wanted was John’s Hopkins to honor her mother and to explain to her how the cells worked but they couldn’t do even that
• Eventually Debra talks to the author of the book
• BUT DID THE AUTHOR PROMISE TO GIVE LACKS FAMILY MONEY from the book?????
• Also I don’t like the author. She keeps saying she wants to share Henrietta story but doesn’t seem get the Lack’s family needs (money, consoling) or the bigger picture of power at play (white people exploiting black people)
• Christoff, a researcher at John’s Hopkins, invites Debra and Zachariah over to see HeLa cells and finally explains cells and DNA to her and about the cells … aww it’s so finally wholesome … why did it take so long??? And an independent researcher????
• They even get to see her cells divide

Chapter 37

• Deborah is supposed to speak at Henrietta Lacks Conference then 9-11 happens. Deborah is so fucking stressed and then has a stroke
• She wants t go to school but it’s too expensive and she can’t afford it so she says it’s to late for her :(((( she focuses on her grandchildren instead

Afterward

• Apparently your tissue samples float around in clinical research. It’s like random bits of your data floating in the internet.
• One problem is how to compensate tissue donors whose tissues end up being used in useful drugs and shit. What about using blockchain?