Rebecca Skloot

She was 16, taking a community college biology class in Portland in 1988, when the instructor wrote a name on the board and said the HeLa cells every laboratory in the world used had come from a Black woman who died of cervical cancer in 1951. Nothing more was known about her. Skloot followed him to his office afterward and asked where the woman was from and whether she had children, and he told her nobody knew. She has said she started asking that day and never stopped. She took a biology degree, worked as a veterinary technician, and then went for an MFA in nonfiction writing, which is the odd pairing the story turned out to need.

The reporting took a decade. The Lacks family had been approached before by researchers and by journalists, and had come away used, and Skloot spent years on unreturned calls before she was let in. Deborah Lacks, Henrietta's daughter, became her collaborator and the book's second subject. Skloot paid for the work with credit cards and student loans. Publishers kept passing, and the manuscript moved through three houses and four editors before The Immortal Life of Henrietta Lacks was published in February 2010. It sat on the bestseller list for years and became assigned reading in American high schools and universities.

The book creates the problem the book is about. A white writer was telling a Black family's story, and would be paid for what the family had never been paid for. Journalistic ethics kept her from paying the family for the story, so she used her first royalty check to start the Henrietta Lacks Foundation and has directed a share of the proceeds to it since. It has made grants for tuition, health care, job training and emergency relief to more than 30 members of the family. Family members do not agree about the arrangement. Lawrence Lacks, Henrietta's eldest son and the executor of her estate, said in 2017 that it does not help the family as advertised and asked that it be handed to him. Others have defended it. The dispute is on the record and unsettled.

In March 2013 a HeLa genome was published without asking the family, and Skloot told them it had happened. That August the National Institutes of Health announced an agreement giving the Lackses a say over access to the data, with two family members seated on the group that reviews requests. The book is now standard in bioethics and medical training, and the question it pressed — what a hospital may do with tissue taken out of you — gets argued in regulation rather than ignored. HBO filmed it in 2017, with Oprah Winfrey as Deborah and Rose Byrne as Skloot. Her place on this site rests on one book. That is rare here, and the book changed something real.

Rebecca Skloot's life against the full span of the corpus — the fading end marks a life still in progress.

• Henrietta's Dance other
  Johns Hopkins Magazine. The first long published version of the story, written while she was still in graduate school 2000
• The Immortal Life of Henrietta Lacks book
  Ten years of reporting. Reached number one, stayed on the bestseller list for years, translated into more than 25 languages 2010
• The Henrietta Lacks Foundation other
  Grants for tuition, health care, job training and emergency relief to Lacks descendants and to families from other non-consented research 2010
• The Best American Science Writing 2011 book
  Edited with her father, the poet and essayist Floyd Skloot 2011
• The Immortal Life of Henrietta Lacks, The Sequel other
  New York Times essay on the publication of the HeLa genome without the family's consent 2013
• Your Cells. Their Research. Your Permission? other
  New York Times essay on proposed federal rules for consent to research on human tissue 2015

• 1988 aged ~16 Hears the name Henrietta Lacks in a community college biology class at 16 The instructor said the HeLa cells had come from a Black woman who died in 1951 and that nothing more was known about her. She asked, and was told there was nothing to tell.
• April 2000 aged 27 Publishes Henrietta's Dance in Johns Hopkins Magazine The first long version of the story to appear in print, nine years before the book was finished.
• November 17, 2001 aged 29 Takes the story to a national readership in The New York Times Cells That Save Lives Are a Mother's Legacy. The reporting ran on credit cards and student loans for years afterward.
• 2009 aged ~37 Deborah Lacks dies before the book is published Henrietta's daughter had worked with Skloot for a decade and is the second subject of the book. Sources differ on the day.
• February 2, 2010 aged 37 The Immortal Life of Henrietta Lacks is published The manuscript had moved through three publishing houses and four editors.
• 2010 aged ~38 Starts the Henrietta Lacks Foundation with her first royalty check She could not pay the family for their story without breaking journalistic practice. The foundation was the alternative, and family members have differed about it since.
• August 7, 2013 aged 40 The NIH and the Lacks family announce the HeLa genome data agreement Two family members on the working group that reviews applications for the data, and acknowledgement in papers. No share of any proceeds.
• April 22, 2017 aged 44 The HBO film premieres, with Oprah Winfrey as Deborah and Rose Byrne as Skloot Directed by George C. Wolfe. Two of Henrietta Lacks's sons consulted on it.

• Henrietta Lacks 1920–1951
  Her cells were taken without her knowledge in 1951 and became the most used human cell line in science. told her story
• Francis Collins b. 1950
  Led the public Human Genome Project and directed the National Institutes of Health the NIH agreement with the family
• James Watson 1928–2025
  Co-discoverer of the DNA double helix structure, earning a Nobel Prize in Physiology or Medicine. published his own genome by choice
• Vivien Thomas 1910–1985
  Devised the blue-baby heart operation without a medical degree, and went unnamed on the paper. Johns Hopkins and who gets credited
• Daniel Hale Williams 1856–1931
  Founder of Provident Hospital and early cardiac surgeon race and American medicine