The Epiphany of Unwilling Immortality: Henrietta Lacks

 

Good Sunday morning, good pilgrims on the way of the remains of The Epiphany Season. Today is (was) known as Sexagesima, the second Sunday before Lent, which makes it 58 days (not 60) and the 8th Sunday before Easter.

Back in the day, the focus of the meditation for this week was on the story of Noah and how, after the destruction of the flood, God set a rainbow in the sky to remind all of God's creatures (and, I suspect, God's self) of God's promise of a kind of immortality. God promised never again to destroy the earth, its creatures or creation, that we would live on through each other. 

I don't know that God had to make that promise. I suspect we needed to make that promise to God. We seem to be testing God at God's word every single day.

Today is also the 23rd day of Black History Month and I want to lift up, celebrate, and call out the name of the one who shines as an Epiphany, a manifestation of God. It's a tragic story, as many of the stories in this part of American history often are, but it is one that proves that Dr. King was right: The moral arc of history is long, but it always bends toward justice.

Today I want to talk about Henrietta Lacks, the woman whose cells, harvested without her permission, saved countless millions of people with cancer.

Her story begins on August 1, 1920, in Roanoke, Virginia, where she was born to Eliza Pleasant (nee Lacks) and John "Johnny" Randall Pleasant.  Her family is uncertain how her name changed from Loretta to Henrietta, but she was nicknamed Hennie.

Ms. "Hennie"

When Ms. Henrietta was four years old in 1924, her mother died giving birth to her tenth child. Unable to care for the children alone after his wife's death, Ms. Henrietta's father moved the family to Clover, VA, where the children were distributed among relatives.

She 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 Ms. Henrietta's white great-grandfather and great-uncle. She shared a room with her nine-year-old first cousin and future husband, David "Day" Lacks (1915–2002).

Like many people in her family and town, Ms. Henrietta began working as a child on the tobacco farm where she fed the animals, tended the garden and worked the tobacco fields. Due to family necessity, she dropped out of school when she was in the sixth grade. When she was 14 years old, she had her first child, a boy, followed by a daughter who was born seriously disabled.

Ms. Henrietta married David Lacks in 1941. Later that same year, they moved with a cousin to Turner Station, MD, so her husband could get a job at Bethlehem Steel at Sparrow's Point, outside of Baltimore. Eventually, they were able to purchase a house in that same town which became the oldest and largest African American community in Baltimore County at that time.

Ms. Henrietta and David had three more children together. In 1951, at the age of 31 and less than 6 months after having given birth to her 5th and last child, Ms. Henrietta visited The Johns Hopkins Hospital complaining of vaginal bleeding. Upon examination, renowned gynecologist Dr. Howard Jones discovered a large, malignant tumor on her cervix.

Not long before her death, doctors removed some of the cells from the tumor. They later discovered that the cells could thrive in the lab, something no human cells had every before achieved. Indeed, it was discovered that Henrietta's cells were unlike any of the others he had ever seen: where other cells would die, her cells doubled every 20 to 24 hours.

Soon the cells, called HeLa cells, were being shipped from Baltimore around the world. For 62 years — twice as long as Ms. Henrietta's own life — her cells have been the subject of more than 74,000 studies, many of which have yielded profound insights into cell biology, vaccines, in vitro fertilization and cancer.

 

Lacks Family - Congressional Medal of Honor

Perhaps it was because Hopkins Hospital was only one of a few hospitals to treat poor Black people that they felt a sense of "ownership". But Henrietta Lacks, who was poor, Black and uneducated, never consented to her cells being studied. For 62 years, her family had been left out of the decision-making about that research.

Hopkins Hospital also stated that, after reflection on their 50 year relationship with the Lacks family, "we found that Johns Hopkins could have – and should have – done more to inform and work with members of Henrietta Lacks’ family out of respect for them, their privacy and their personal interests."

Finally, in 2013, the National Institutes of Health came to an agreement with the Lacks family to grant them some control over how Henrietta Lacks’s genome is used. In the history of the NIH, that had never before happened .

In fairness, it should be noted that, Johns Hopkins has never sold or profited from the discovery or distribution of HeLa cells and does not own the rights to the HeLa cell line. Rather, as Johns Hopkins itself reports, they "offered HeLa cells (named for the first two letters of her first and last name) freely and widely for scientific research."

Officials at the National Institutes of Health ultimately acknowledge that they should have contacted the Lacks family when researchers first applied for a grant to sequence the HeLa genome. They belatedly addressed the problem after the family raised its objections.

The Lacks family and the N.I.H. settled on an agreement: the data from both studies should be stored in the institutes’ database of genotypes and phenotypes. Researchers who want to use the data can apply for access and will have to submit annual reports about their research. A so-called HeLa Genome Data Access working group at the N.I.H. will review the applications. Two members of the Lacks family will be members.

The agreement does not provide the Lacks family with proceeds from any commercial products that may be developed from research on the HeLa genome.

The Lack Grand & Great Grand Daughters

As one who has benefited from cancer research, I feel a special debt of gratitude to Ms. Henrietta Lacks, unwitting and unwilling as she might have been to be a recipient of my deep thanks.

I am especially grateful that the research on her cells has made it possible to test my DNA as well as the unique DNA of my particular cancer tumor which provides information for me to pass on to my children and grandchildren.

They now know that the DNA that was passed down to them from me does not contain the DNA of either breast nor bowel cancer.

Ms. Henrietta is remembered as having hazel eyes, a small waist, size 6 shoes, and always wearing red nail polish and a neatly pleated skirt. She will also be remembered with her name on a building at Johns Hopkins, a Congressional Medal of Honor, and in various other ways.

Ms. Henrietta Lacks will live on in immortality - without her understanding or permission - with deep gratitude that, despite her tragedy and poverty and oppression, and through the persistent efforts of her children and grandchildren, something good has come.

There are many ways God's promise to Noah is lived out. A rainbow in the sky is but one.

I hope something good happens to you today.

Bom dia.