Oct 14, 2021 · The Lacks family has retained Benjamin Crump as their lead attorney. Crump, who previously represented the families of George Floyd and Breonna Taylor, says he believes this case can bring justice ...
Jul 31, 2020 · Rebecca Skloot and Deborah Lacks needed to meet. The Two Women Meet. Deborah finally agreed to meet Skloot in 2000. They bonded almost immediately. Even as Rebecca Skloot and Deborah Lacks became friends, though, Deborah would occasionally become paranoid, accusing Skloot of working for Hopkins or trying to benefit financially off the family.
Nov 08, 2021 · Daughter Deborah wanted nothing more than her mother’s contribution to medical science to be recognized; son Lawrence wanted – and still wants – compensation from medical establishments ...
Michael Pitt, a Michigan civil rights attorney known for his brash behavior, worked with LaBelle on the Livingston County Jail litigation, which challenged gender discrimination and sexual harassment at the facility. He considers her a perfect counterpoint to his aggressive style. “Deb is a careful, deliberate person,” he says.
Jun 25, 2018 · The book was written by Rebecca Skloot with the help of Deborah Lacks, a daughter of Henrietta Lacks. Five family members served as paid consultants to the movie, according to a 2017 Washington ...
Skloot took Deborah (and Zakariyya) to see their mother’s cells at a Hopkins lab; and, in 2001, Rebecca Skloot and Deborah Lacks traveled together to Crownsville, Maryland, where Elsie, Deborah’s older sister, had lived most of her life in what was then called the Hospital for the Negro Insane.
What was the relationship between the two women like? Rebecca Skloot and Deborah Lacks met while Skloot was researching Deborah’s mother, Henrietta Lacks. The two women became friends, despite an age gap of more than 20 years. Read about their relationship, including some paranoia that made things tense at times.
The last time Rebecca Skloot and Deborah Lacks were together, she’d made her grandson Davon and Skloot watch Roots and Spirit, an animated film about a wild horse, back to back. She wanted them to see the similarities between Kunta Kinte and Spirit, how they both fought for their freedom.
The records were in total disarray, and Skloot set to organizing them. At a certain point in the night, after having stared at Elsie’s picture for hours, Deborah asked about a word in Elsie’s autopsy report. When Skloot defined it, Deborah said she didn’t want the word to appear in Skloot’s book.
Deborah’s Stroke. Shortly thereafter, and five days after 9/11, Deborah suffered a stroke during a church service. She survived and recovered fully. Eight years later, in 2009, Deborah died in her sleep.
The Two Women Meet. Deborah finally agreed to meet Skloot in 2000. They bonded almost immediately. Even as Rebecca Skloot and Deborah Lacks became friends, though, Deborah would occasionally become paranoid, accusing Skloot of working for Hopkins or trying to benefit financially off the family.
When Skloot defined it, Deborah said she didn’t want the word to appear in Skloot’s book. Skloot smiled at Deborah ’s protectiveness and agreed, but Deborah misunderstood. She accused Skloot of lying and shoved her up against a wall. Skloot, losing her patience, cursed at Deborah.
She is acclaimed as the progenitor of the immortalized HeLa cell line – cells that keep replicating without dying, the fodder of numerous advances in medicine. But I see her as a beacon to the importance of informed consent and privacy in medical research: Henrietta Lacks is responsible for instituting better patient controls in federally funded medical research. Yet, like in many famous families, Henrietta Lacks is not resting in peace – dissension brews, and some of it surrounds the fanfare about an impending lawsuit.
Lawrence also reportedly once accused author Rebecca Skloot (the founder of the Henrietta Lacks Foundation and author of The Immortal Life of Henrietta Lacks ), Oprah Winfrey and HBO, who produced the TV version of Skloot’s book, of profiting from his mother’s legacy without compensating the family. Oprah (who starred in the TV movie) would hear none of it, other than saying the son was offered a paid consultancy on the project and refused, and calling this “a family disagreement that I would be happy not to be in the middle of.”
The lack of transparency in the medical community that birthed the HeLa cells is not fully addressed by the latest rendition of the Common Rule. The legal and ethical abuses here were manifold, compounded by a family divided in itself. The situation raises important questions for genome research — such as whether family members have the right to override the wishes of individuals who choose to share their genetic data or provide un-anonymized tissue for research. And once having obtained genetic information from a consenting participant, are scientists obligated to disclose that genetic information to family members for whom it might impact?
The compensation sought by Lawrence, the anonymity promised by the Common Rule, the restricted usage proposed by others are not what other family members want. Several descendants are leading a new effort in her centennial year, calling for people to celebrate her life and legacy. This raises the question of whether the anonymity promised by the Common Law, suitable for most- might be an insensitive means of addressing the Henrietta Lacks situation.
Their use also raises complicated ethical and legal issues: disregard of patient’s rights, privacy issues, the conflict between the needs of the public and the rights of the individual, racism, informed consent for triple-use projects (treatment, research, and business), and the decision-making role of the family – especially when family voices conflict.
Avaricious attorneys and a sordid family saga shouldn’t deflect us from real ethical and legal issues needing resolution.
Disclosure of her name associated without her consent seems unduly intrusive . Moreover, those cells contain genetic information that relates to her descendants; such disclosure infringes on their privacy as well.
When Deborah LaBelle studied philosophy at Columbia University and environmental law at Wayne State University, she considered herself mainly a theorist ; then two lawsuits set her on the road to activism. The first, involving the Freedom Riders, opened her eyes to the good the law could do; the second, involving women prisoners, gave her her life’s work.
A friend working for Michigan Legal Services asked her to take on a case because she feared she wouldn’t be able to finish it; she had been diagnosed with cancer. “I didn’t want to do it, but she told me she would will it to me after her death if I didn’t,” LaBelle says.
Instead of filing court cases, LaBelle is trying legislation and international human rights commissions. “This is new for me to work with legislation first,” she says. “But as a lawyer, sometimes you wish you could go back to the beginning and stop the flow.”
We developed human rights law,” she says, adding that it is particularly useful to discuss human rights law in cases that include both a U.S. citizen and a foreign national. “I’m often encouraged by these cases because one person gets these rights — a defendant from Colombia for instance — and yet those same rights aren’t given to U.S. citizens. It also encourages judges to be the best they can be to protect human rights and dignity.”
“They give me the balance I need,” she says of her son Jacob, 12, and her partner, Marianetta Porter, a professor of art at the University of Michigan. “I couldn’t do this work without them.”
In 2004, LaBelle turned her attention to the issue of children in adult prisons. Working with the ACLU, Amnesty International and Human Rights Watch, her team conducted research to shed light on juveniles in the Michigan criminal justice system, and later in the national justice system — and how their treatment compares to the rest of the world.
Bostick, who has represented Lawrence Lacks and his sons for more than a year, plans to file the petition for guardianship of the cells in July in Baltimore County, where Lacks’s estate resides. The petition will not include ownership, Bostick said.
During the panel discussion, Lawrence Lacks said he is still distraught over what happened to his mother at the hospital.
Doctors discovered a malignant tumor on her cervix and collected cells from the tumor without her knowledge or consent , according to a report by Johns Hopkins Medicine titled “The Legacy of Henrietta Lacks.”. Advertisement.
Lawrence Lacks, the executor of Lacks’s estate, said the family did not know until many years after his mother died that her cells were living in test tubes in science labs across the world.
Can the ‘immortal cells’ of Henrietta Lacks sue for their own rights? - The Washington Post. The cells, which were taken without consent from the young mother in 1951, have been the subject of a multibillion-dollar research industry — but family members are fighting to regain control. Skip to main content.
Lawrence Lacks , 85, said during a panel discussion at Busboys and Poets in Washington last week that “I did not want to sell rights to my life.”. Story continues below advertisement. He said he disagreed with the way the family was portrayed, though some family members have endorsed the book and movie.
In 2004, a Florida appeals court panel ruled that Gov. Jeb Bush could not appoint a guardian for the fetus of a developmentally disabled woman who had been raped and impregnated by a staff member at a state-run group home in Orlando.
Bobbette Lacks is the wife of Lawrence Lacks, son of the late Henrietta Lacks. Bobbette took in Lawrence’s younger siblings who were living in an abusive home after their mother’s death.
In 1973, Bobbette met a researcher at the National Cancer Institute who was working with HeLa cells and had recently read one of the articles that identified Henrietta. This chance meeting was how the Lackses first discovered their mothers’ cells were still alive.
This article is an excerpt from the Shortform summary of "The Immortal Life of Henrietta Lacks" by Rebecca Skloot. Shortform has the world's best summaries of books you should be reading.