Henrietta Lacks

Henrietta Lacks was born Loretta Pleasant on August 1, 1920,[2][8] in Roanoke, Virginia, to Eliza Pleasant (nee Lacks) (1886–1924) and John "Johnny" Randall Pleasant (1881–1969).[9] Her family is uncertain how her name changed from Loretta to Henrietta, but she was nicknamed Hennie.[2] When Lacks was four years old in 1924, her mother died giving birth to her tenth child.[9] Unable to care for the children alone after his wife's death, Lacks' father moved the family to Clover, Virginia, where the children were distributed among relatives. Lacks ended up with her maternal grandfather, Thomas "Tommy" Henry Lacks, in a two-story log cabin that was once the slave quarters on the plantation that had been owned by Henrietta's white great-grandfather and great-uncle.[2] She shared a room with her nine-year-old first cousin (their mothers were sisters) and future husband, David "Day" Lacks (1915–2002).[9]

Like most members of her family living in Clover, Lacks worked as a tobacco farmer starting from an early age. In 1935, when Lacks was 14 years old, she gave birth to a son, Lawrence Lacks. In 1939, her daughter Elsie Lacks (1939–1955) was born. Both children were fathered by Day Lacks. Elsie had developmental disabilities and was described by the family as "different" or "deaf and dumb".[2]

On April 10, 1941, Day and Henrietta Lacks were married in Halifax County, Virginia.[2] Later that year, their cousin, Fred Garrett, convinced the couple to leave the tobacco farm in Virginia and move to Maryland where Day Lacks could work at Bethlehem Steel in Sparrow's Point. Not long after they moved to Maryland, Garrett was called to fight in World War II. With the savings gifted to him by Garrett, Day Lacks was able to purchase a house at 713 New Pittsburgh Avenue in Turner Station. Now part of Dundalk, Turner Station was one of the oldest and largest African-American communities in Baltimore County at that time.[10][11]

Living in Maryland, Henrietta and Day Lacks had three more children: David "Sonny" Lacks Jr. (b. 1947), Deborah Lacks Pullum (born Deborah Lacks; 1949–2009), and Joseph Lacks (1950). Henrietta gave birth to her last child at the Johns Hopkins Hospital in Baltimore in November 1950, four and a half months before she was diagnosed with cervical cancer.[2] Around the same time, Elsie was placed in the Hospital for the Negro Insane, later renamed Crownsville Hospital Center, where Elsie died in 1955 at the age of 15 years old.[2]

Both Lacks and her husband were Catholic.[12]

On January 29, 1951, Lacks went to Johns Hopkins, the only hospital in the area that treated black patients, because she felt a "knot" in her womb.[13] She had previously told her cousins about the "knot" and they assumed correctly that she was pregnant. But after giving birth, Lacks had a severe hemorrhage. Her primary care doctor tested her for syphilis, which came back negative, and referred her back to Johns Hopkins. There, her doctor, Howard W. Jones, took a biopsy of a mass found on Lacks' cervix for laboratory testing. Soon after, Lacks was told that she had a malignant epidermoid carcinoma of the cervix.[lower-alpha 1][15] In 1970, physicians discovered that she had been misdiagnosed and actually had an adenocarcinoma.[lower-alpha 2] This was a common mistake at the time, and the treatment would not have differed.[17]

Lacks was treated with radium tube inserts as an inpatient and discharged a few days later with instructions to return for X-ray treatments as a follow-up. During her treatments, two samples were taken from Lacks' cervix without her permission or knowledge; one sample was of healthy tissue and the other was cancerous.[18] These samples were given to George Otto Gey, a physician and cancer researcher at Johns Hopkins. The cells from the cancerous sample eventually became known as the HeLa immortal cell line, a commonly used cell line in contemporary biomedical research.[2]

On August 8, 1951, Lacks, who was 31 years old, went to Johns Hopkins for a routine treatment session and asked to be admitted due to continued severe abdominal pain. She received blood transfusions and remained at the hospital until her death on October 4, 1951.[19] A partial autopsy showed that the cancer had metastasized throughout her entire body.[2][20]

Lacks Town Road in Clover, Virginia, near where Lacks grew up and is buried

Lacks was buried in an unmarked grave in the family cemetery in a place called Lackstown in Halifax County, Virginia. Lackstown is the name that was given to the land in Clover, Virginia, that was originally owned by slave-owning members of the Lacks family in the antebellum South.

Lacks's exact burial location is unknown, but the family believes that it is within a few feet of her mother's grave site, which for decades was the only one in the family to have been marked with a tombstone.[2][20][21] In 2010, Roland Pattillo, a faculty member of the Morehouse School of Medicine who had worked with George Gey and knew the Lacks family,[22] donated a headstone for Lacks.[23] This prompted her family to raise money for a headstone for Elsie Lacks as well, which was dedicated on the same day.[23] The book-shaped headstone of Henrietta Lacks contains an epitaph written by her grandchildren that reads:[2]

Neither Henrietta Lacks nor her family gave her physicians permission to harvest her cells. At that time, permission was neither required nor customarily sought.[34] The cells were used in medical research and for commercial purposes.[20][2] In the 1980s, family medical records were published without family consent. A similar issue was brought up in the Supreme Court of California case of Moore v. Regents of the University of California in 1990. The court ruled that a person's discarded tissue and cells are not their property and can be commercialized.[35]

In March 2013, researchers published the DNA sequence of the genome of a strain of HeLa cells. The Lacks family discovered this when the author Rebecca Skloot informed them.[32] There were objections from the Lacks family about the genetic information that was available for public access. Jeri Lacks Whye, a grandchild of Henrietta Lacks, said to The New York Times, "the biggest concern was privacy - what information was actually going to be out there about our grandmother, and what information they can obtain from her sequencing that will tell them about her children and grandchildren and going down the line”. That same year another group working on a different HeLa cell line's genome under National Institutes of Health (NIH) funding submitted it for publication. In August 2013, an agreement was announced between the family and the NIH that gave the family some control over access to the cells' DNA sequence found in the two studies along with a promise of acknowledgement in scientific papers. In addition, two family members will join the six-member committee which will regulate access to the sequence data.[36][32]

The question of how and whether her race affected her treatment, the lack of obtaining consent, and her relative obscurity, continues to be controversial.[60][61]

The HeLa cell line's connection to Henrietta Lacks was first brought to popular attention in March 1976 with a pair of articles in the Detroit Free Press[62] and Rolling Stone written by reporter Michael Rogers.[63] In 1998, Adam Curtis directed a BBC documentary about Henrietta Lacks called The Way of All Flesh.[64]

Rebecca Skloot documented extensive histories of both the HeLa cell line and the Lacks family in two articles published in 2000[21] and 2001[65] and in her 2010 book The Immortal Life of Henrietta Lacks.

HBO announced in 2010 that Oprah Winfrey and Alan Ball were developing a film project based on Skloot's book,[23] and in 2016 filming commenced.[66][67] with Winfrey in the leading role of Deborah Lacks, Henrietta's daughter.[68][69] The film The Immortal Life of Henrietta Lacks was released in 2017, with Renée Elise Goldsberry portraying Lacks.

NBC's Law & Order aired its own fictionalized version of Lacks's story in the 2010 episode "Immortal," which Slate referred to as "shockingly close to the true story"[70] and the musical groups Jello Biafra and the Guantanamo School of Medicine and Yeasayer both released songs about Henrietta Lacks and her legacy.[71][72]

Members of the Lacks family authored their own stories for the first time in 2013 when Lacks's oldest son and his wife, Lawrence and Bobbette Lacks, wrote a short digital memoir called "Hela Family Stories: Lawrence and Bobbette" with first-hand accounts of their memories of Henrietta Lacks while she was alive and of their own efforts to keep the youngest children out of unsafe living environments following their mother's death.[73]

The HeLa Project, a multimedia exhibition to honor Lacks, opened in 2017 in Baltimore at the Reginald F. Lewis Museum of Maryland African American History & Culture. It included a portrait by Kadir Nelson and a poem by Saul Williams.[74]

"HeLa," a play by Chicago playwright J. Nicole Brooks, was commissioned by Sideshow Theatre Company in 2016, with a public staged reading on July 31, 2017. The play was produced by Sideshow at Chicago's Greenhouse Theater Center from November 18 to December 23, 2018. The play uses Lacks's life story as a jumping point for a larger conversation about Afrofuturism, scientific progress, and bodily autonomy.[75]

In the series El Ministerio del Tiempo, the immortality of her cells in the lab is cited as the precedent for the character Arteche's "extreme resistance to infections, to injuries, and to cellular degeneration. In other words to aging": that his cells are immortal.[76]