Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=220411
Story Retrieval Date: 9/19/2014 2:49:35 AM CST
Ashley McCabe/ Providence College. (Used with permission.)
Son of Henrietta Lacks, David "Sonny" Lacks and granddaughter, Jeri Lacks Whye discuss the HeLa cell at Providence College.
Family explores 'immortal cell' 62 years after mother's death
Before the 2010 publication of Rebecca Skloot’s best-selling “The Immortal Life of Henrietta Lacks,” little was known about the woman behind the immortal HeLa cell.
Today, Henrietta Lacks' family is preserving her legacy by speaking at events across the country to discuss their mother’s influence, bioethics in light of recent developments in the HeLa cell and their experience discovering their mother’s fate through Skloot’s book.
Lacks’ son, David “Sonny” Lacks and his daughter, Jeri Lacks Whye, had been scheduled to speak at Prairie State College Wednesday. But a family spokeswoman said Tuesday afternoon that David Lacks had experienced a "health issue" and would be unable to attend. In his place his son, David Jr., is scheduled to speak.
In 1951, Lacks, a Baltimore tobacco farmer and mother of five, died of cervical cancer, but the cells taken from her tumor lived on to propel medical advances including the polio vaccination and in vitro fertilization.
It was not until 20 years after Lacks’ cells were taken without her consent that her children learned of the ethical dilemma that infringed upon their family. Scientists began using the DNA of Henrietta’s survivors for HeLa research without fully disclosing their intent.
Henrietta’s son, David “Sonny” Lacks told the Medill News Service in a telephone interview his initial reaction to learning his mother’s impact on modern medicine: “I was surprised. It took time, but it’s gotten to the point now that I accept that the HeLa cell is a learning experience.”
In the latest development, Lacks is reliving his experience from 20 years ago. Scientists from the European Molecular Biology Laboratory, known as EMBL, in Heidelberg, Germany published the cell’s genome online last month without consent from the Lacks family.
“We requested that the lab remove the sequencing off the Internet. It’s private information and its something that they published without our knowledge or involving us in the process,” said Jeri Lacks Whye, Henreitta Lacks’ granddaughter.
Proving to be another grey area in the realm of bioethics, science writer and board member of the Henrietta Lacks Foundation, David Kroll called attention to the fact that EMBL did not have a legal obligation to consult the Lacks family although the lab responded shortly after their request by removing the gene sequencing from the Internet.
Lacks said this repeat offense motivates him to make sure that people do not forget his mother’s influence on science.
“I want to let people know who she is and that she is the person that gave the HeLa cell,” said Lacks.
Lacks Whye added, “We want to continue to tell her story so it won’t get put on the sideline...let people know her contributions.”
Lacks’ influence transcends medicine and has directly affected the lives of her children. Each of her three surviving children honors her influence through public service.
Eldest son, Lawrence Lacks established The Lacks Family HeLa Foundation, which according the mission statement, is dedicated to providing financial, psychological and social support for cancer patients and their families.
Zachariah Lacks, the youngest of the three, is also in the process of developing an organization to help people with cancer by providing medical assistance such as transportations from doctor’s visits.
David Lacks, the most vocal of his siblings, contributes to his brother’s foundation in addition to speaking on the HeLa cell across the country.
“We want to share our experience in hopes of helping others,” said David Lacks.
Lacks also mentioned how Skloot’s book provided closure for him. “The book was helpful in understanding my mother more,” Lacks said.
“It was my opportunity to learn about my grandmother … I got a vivid description of who my grandmother was. She was short, had small feet, red nail polish, she liked to dance, she liked to cook. She was a giving person,” Lacks Whye said.
A description of Henrietta is among the topics of discussion at a standard speaking engagement for Lacks and his daughter, Lacks Whye.
“It’s exciting to go around to different universities and colleges speaking to students and faculty members and people of the community that want to know our story and embrace our story…it’s a wonderful feeling,” Lacks Whye said.