Blog dedicated primarily to randomly selected news items; comments reflecting personal perceptions

Sunday, April 23, 2017

The Looted Gift That Keeps On Giving

"She grew up in the very rural South during the era of segregation. She was descended from slaves who had worked this tobacco plantation that eventually she came to own a piece of."
"She was sort of like this uber-mother. She just took care of everyone; her kids, her cousins' kids, the neighbours' kids. If you didn't have a girlfriend, she'd find you one; if you didn't have a place to stay, you slept on a mattress in her hallway."
"They [the Lacks family] talk about that [scientific advances HeLa cells have supported], how they feel it's so important for scientists to really learn the story of Henrietta and her family and the impact  this had on them. They hope that in the future other people don't have to have the same experiences."
"Nothing like this ever happened where either research participants or tissue donors are part of the process. [The family] wanted this genome to help the world, but also basically wanted this whole [lack of consent] process to stop with this generation."
"They went in and they took these samples and it was totally standard at the time. They were taking samples from really anybody they could get their hands on. We didn't even have the term 'informed consent' [until recently]."
Rebecca Skloot, writer, author: The Immortal Life of Henrietta Lacks

Henrietta and David Lacks
Henrietta Lacks' cells were essential in developing the polio vaccine and were used in scientific landmarks such as cloning, gene mapping and in vitro fertilization. (Courtesy of the Lacks family)

"Pretty much every university, every hospital research lab has these cells [the legacy cells named HeLa after Henrietta Lacks]." 
". . . Normally cells will divide only a certain number of times, even under the best conditions, and then they'll stop."
"Immortalized cells will just divide and divide and divide and they don't tend to be contact-inhibited. They'll pile up on top of each other and they also grow indefinitely."
Dr. Jim Woodgett, biochemist, director, Lunenfeld-Tanenbaum Research Institute, Mount Sinai Hospital, Toronto

"If Henrietta Lacks were to walk into John Hopkins today and get her cervical cancer biopsied [for research] ... they would need to get her consent prior to doing that."
Dr. Michael Szego, acting director, Centre for Clinical Ethics, St.Michael's Hospital, Toronto
These very special cells named 'immortal' in recognition of their special ability to forever divide, giving scientists and research the upper hand through an endless source of biological cells, have given immeasurable assistance to science and medicine for the past sixty-six years. Because they are plentiful and reliable, they comprise a kind of even playing field whereby scientists anywhere in the world can begin their scientific medical process of enquiry with the very same platform, enabling replication of successful formulae and findings.

And all this endless supply of biological cells used as a basis for scientific enquiry and work can be traced to one single individual. She had never been informed that her cells had been casually harvested, much less a request made for her permission, nor had anyone in her family. Those thriving cells with their unique properties whose duplication is ongoing, favouring science and strides in medicine were named HeLa cells to distinguish them as having been sourced from Henrietta Lacks, who died at age 30, a mother of five young children, from cervical cancer.

She was being treated at the Johns Hopkins Hospital in Baltimore, a poor African American woman whose husband was a tobacco farmer from Virginia, when a biopsy was taken of her cancerous tumour as was common practise at the time, to be used for human tissue research. And then they were recognized as biomedical tools of semi-miraculous provenance. Henrietta Lacks died of her cancer, but the cells that hosted the cancer that killed her now serve the biomedical research community universally.

The Involvement Of HeLa Cells Helped To Create The Polio Vaccine

Dr. Jonah Salk's polio vaccine of the early 1950s owe their success to those HeLa cells, as do likewise countless drugs and research advances valued in billions of dollars, over the years that followed her death. Once it became publicly known that this woman who died of cancer unknowingly and without her permission has provided the wherewithal for biomedical research to proceed, the issue of ethics and compensation entered the picture, a hugely controversial subject.  One woman's cellular immortality had an enormous impact on worldwide medical research.

HeLa cells have been used for a wide variety of purposes; to grow viruses for vaccine development, to study cancer, AIDS and cell division as well as to test radiation effects and poisons on human tissues. Normal cells will grow in a laboratory Petri dish until they touch one another, which signals them somehow to stop growing; the contact inhibiting further growth. To persuade them to grow again they must be separated, but even then their growth becomes limited and eventually stops, whereas 'immortalized cells', an extreme rarity, go on forever.

Henrietta Lacks died in 1951, and in 1973 researchers contacted her family to hope to persuade them to take part in studies, the purpose of which was initially puzzling to them, since they had no idea that wife and mother Henrietta Lacks's cells had been purloined for use among the international medical research community. Some family members were appalled and resentful that consent was never sought nor given. The fact that this was a poor family eking out a living on the land, while their family member's cells had generated billions of dollars in profits was infuriating.

A public outcry arose, and those in the medical community responded with their own shame at the neglect of this woman's contribution to medical science. Two of Henrietta Lacke's descendants now sit on a U.S. National Institutes of Health board whose purpose is to determine who will be given clearance to use her genetic information as well as for what purposes. As Dr. Szego of St.Michael's Hospital points out, no tissues of genetic anomalies used in research today can be used without a patient's consent, nor can it be labelled with identifying data.

Even so, cells or other biological materials taken through routine surgical treatments; an artery snipped out in heart surgery as an example; are thought of in the light of medical waste and thus conventionally can be used with conscience in laboratories, without the approval of the patients from whom they have been taken, according to Dr. Szego.

HeLa cells -- Photo credit: National Institutes of Health

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