The Immortal Life of Henrietta Lacks: consent and HeLa

Henrietta Lacks was a Black woman from southern Virginia who was treated for cervical cancer at Johns Hopkins in 1951 and died that year. During her treatment, cells were taken from her tumor. They grew in culture and did not stop. They became HeLa, the first immortal human cell line, and they went into laboratories all over the world.

Spoilers, and a death stated plainly. Henrietta Lacks died in October 1951, at thirty-one. Rebecca Skloot says so early and the book is not built around suspense about it.

Skloot's book is two things braided together. One is the history of the cell line: how it was made, who distributed it, what it was used for. The other is a decade of reporting with Henrietta Lacks's children, above all her daughter Deborah. Deborah grew up not knowing the cells existed, and then could not stop thinking about them.

It is not a medical guide. There is almost no usable clinical information in it, and that is not a flaw. It is a book about consent, race, class, and what science owes the people it is built on. NIH's own policy page states the position without hedging: the cells came from a biopsy taken in 1951 "without her knowledge or consent."

Because the book is so widely read on this topic, the accuracy of the surrounding claims matters.

The book runs to 369 pages in the Crown hardcover and is organised in three parts, with a prologue, a timeline of events, and Skloot's own account of her reporting.

Part one, life, covers Henrietta Lacks's childhood in Clover, Virginia, her family, her symptoms, her diagnosis at Hopkins and the treatment she was given. Radium was the standard of the day. The clinical detail here is period detail, not current practice.

Part two, death, follows both threads after 1951. One is the spread of HeLa through laboratories, the polio vaccine work, and cell culture becoming an industry. The other is the Lacks children growing up poor, with little schooling and no health insurance.

Part three, immortality, is the reporting. Scientists contacting the family in the 1970s for blood samples without explaining why. Deborah trying to read her mother's medical records. A visit to a laboratory freezer. Skloot alternates chapters and dates the transitions clearly, so the structure is easy to follow even when the two stories are decades apart.

Skloot also writes about her own presence in the story, and about a foundation she set up. Readers who dislike the reporter appearing in the frame will notice it; readers who want to know how the material was obtained will find it useful.

The reporting on the family is the reason the book lasts. Deborah Lacks is a full person on the page rather than a symbol, and her anger, her fear and her curiosity are all allowed to sit together without being resolved.

The book is also precise about mechanism. It explains what a cell line is, why an immortal one was such a big deal, and how contamination and distribution worked, without pretending the reader already knows.

There is a quieter strength in the pacing. Skloot does not make every laboratory milestone feel like a triumph. Nor does she make every family scene feel like a charge sheet. The two threads simply run alongside each other, and the reader is left to hold both.

And it is honest about the gap between the two stories. Cells from a woman who could not afford care produced tools used in enormous amounts of research, while her children could not get medical care themselves. Skloot lets that stand without turning it into a slogan.

The clinical material is 1951 material. Radium treatment, the ward system, the segregated hospital: all accurately reported, none of it a description of how cervical cancer is treated now. Nothing in the book should be read as a picture of current care.

The consent framework is also historical. The book describes events before today's consent and review practice. Reading it as evidence about how research works now gets the history right and the present wrong.

Some of the science reporting has been superseded, and the book was published in 2010, before the 2013 NIH-Lacks Family Agreement. Later editions carry an afterword, but the main text stops earlier.

Finally, the book is sometimes read as an argument that patients own their tissue and are owed money for it. Skloot is more careful than that, and the federal record is about data access and acknowledgement rather than payment.

The concrete change since 1951 is procedural.

NCI describes informed consent in research as a process. The research team explains the study's purpose, procedures and possible risks and benefits before you decide whether to take part. You get written details in a consent form. You have the right to leave at any time, even after signing.

Oversight sits partly with the institutional review board. NCI says it reviews a study before it can enroll patients, to check that it is well designed, legal and ethical, avoids unneeded risks and has a safety plan.

For the HeLa data itself, NIH describes an agreement dated 7 August 2013, reaffirmed in August 2023, developed with members of the Lacks family. HeLa whole genome sequence data sits in dbGaP, under the HeLa Cell Genome Sequencing Studies project. It is released only for health, medical and biomedical research. Access requests go to the Advisory Committee to the Director HeLa Genome Data Access Working Group, which weighs them against a data use agreement. The working group reports to the committee. The committee advises the NIH director, and the director decides. NIH also states the aim of raising awareness of Henrietta Lacks's contribution.

Two things follow from that. The arrangement is about a named dataset, not about tissue in general.

That is a narrow, specific arrangement. It is not a general rule that families control data derived from stored tissue. If you want to know what happens to your own leftover tissue, that is a question for the consent form in front of you and for your care team. For what a research consent conversation should cover, see informed consent in clinical trials.

This is the part of the story the book cannot tell, because none of it existed in 1951.

NCI states that nearly all cervical cancer is caused by HPV, one of a group of more than 200 related viruses. It says it can take 5 to 10 years for HPV-infected cervical cells to become precancers, and about 20 years to become cancer.

CDC recommends HPV vaccination routinely at ages 11 to 12, with vaccination able to start at age 9. Two doses are used if the series begins before the fifteenth birthday, three doses from 15 through 26, and three doses for people with weakened immune systems. Catch-up vaccination is recommended through age 26; for ages 27 to 45 CDC describes it as a decision to discuss with a clinician. CDC states the vaccine has the potential to prevent more than 90% of cancers caused by HPV. It reports HPV infections down 88% among teenage girls.

Screening is the second layer. USPSTF gives cervical screening a Grade A recommendation. From 21 to 29, that is cytology every 3 years. From 30 to 65 there are three options: cytology every 3 years, high-risk HPV testing alone every 5 years, or cotesting every 5 years. It recommends against screening before 21, and against screening after 65 in people adequately screened before, both Grade D. The topic is listed as being updated.

So a disease that killed a thirty-one-year-old woman in 1951 is now one of the few cancers with both a vaccine and a proven screening test. That is the strongest possible answer to the question the book raises about what the research was for. Lacks was never asked.

For the screening schedule in detail, see cervical cancer screening. For the vaccine, see HPV vaccination and cancer prevention.

It suits readers who want to know how research ethics got to where it is. It suits readers interested in race and American medicine. And it suits anyone who has signed a consent form and wondered what it was really for.

It suits book groups, and it suits students, which is why it is assigned so widely. It also suits caregivers who have sat in a hospital feeling that information moved past them rather than to them. The book is very good on what that feels like from the outside.

It does not suit someone who has just been diagnosed with cervical cancer and wants to know what happens next. The treatment in it is seventy-five years old and the emotional weight is heavy. It also will not satisfy a reader looking for a settled legal answer about tissue ownership, because the book does not have one and neither does the federal record.

• Open Library — The Immortal Life of Henrietta Lacks (ISBN 9781400052172)
• NIH — The NIH-Lacks Family Agreement
• NCI — Informed Consent in Clinical Trials
• NCI — HPV and Cancer
• CDC — HPV Vaccination
• USPSTF — Cervical Cancer: Screening

This page discusses a book for education. It is not medical advice, and nothing here is a judgement of anyone's real medical care.