The Immortal Life of Henrietta Lacks: Part 3

Although this attitude wasn’t uncommon at the time, NIH guidelines stipulated that all human subject research funded by NIH—as McKusick’s was—required both informed consent and approval from a Hopkins review board.

There, between graphs of “Disease Specific Infant Mortality” and a description of “the homozygous state of Garrodian inborn errors,” was the photograph of Henrietta with her hands on her hips.

He wanted someone to cure hepatitis B. So he wrote a letter to Nobel Prize-winning virologist Baruch Blumberg, who’d discovered the hepatitis B antigen and created the blood test that found Slavin’s antibodies in the first place.

When Judge Joseph Wapner, most famous for being the judge on The People’s Court television show, ended up refereeing the depositions, Moore figured no one would take the case seriously.

That case set no precedent because it settled out of court, with rights to the cells being divided between the parties involved in the lawsuit, which didn’t include the cell “donor.”

Moore wasn’t awarded any of the profits, but the judge did agree with him on two counts: lack of informed consent, because Golde hadn’t disclosed his financial interests, and breach of fiduciary duty, meaning Golde had taken advantage of his position as doctor and violated patient trust.

But it said that ruling in Moore’s favor might “destroy the economic incentive to conduct important medical research,” and that giving patients property rights in their tissues might “hinder research by restricting access to the necessary raw materials,” creating a field where “with every cell sample a researcher purchases a ticket in a litigation lottery.”

Patient confidentiality has been an ethical tenet for centuries: the Hippocratic Oath, which most doctors take when graduating from medical school, says that being a physician requires the promise of confidentiality because without it, patients would never disclose the deeply personal information needed to make medical diagnoses.

The sample didn’t just test positive; it showed that Henrietta had been infected with multiple copies of HPV-18, which turned out to be one of the most virulent strains of the virus.

Once Axel infected HeLa cells with HIV, Rifkin said, they could infect other cells and expose lab researchers around the world to HIV, “thus increasing the virus’ host range and potentially leading to the further hazardous dissemination of the AIDS virus genome.”

It was an epiphany: scientists had been trying for decades to grow immortal cell lines using normal cells instead of malignant ones, but it had never worked. They thought their technique was the problem, when in fact it was simply that the lifespan of normal cells was preprogrammed. Only cells that had been transformed by a virus or a genetic mutation had the potential to become immortal.

It felt like serendipity—she and several other women had recently founded the Turner Station Heritage Committee, and they were organizing events to bring attention to black people from Turner Station who’d contributed good things to the world: a former congressman who became president of the NAACP, an astronaut, and the man who’d won several Emmy awards as the voice of Sesame Street’s Elmo.

In various court documents, judges described Cofield as a “con artist,” “no more than a gadfly and an exploiter of the court system,” and “the most litigious inmate in the system.”

And through that microscope, for that moment, all she could see was an ocean of her mother’s cells, stained an ethereal fluorescent green.

“She doesn’t look like she has palsy in this picture. What a lovely child.”
“She did have them seizures,” Deborah said.