1980–1985

Life went on for the Lacks family. Deborah remarried. Lawrence went on running his store. Sonny got arrested for selling drugs. Zakariyya, the youngest son formerly known as Joe, was released from prison early, but he still struggled with anger issues and found it difficult to hold down a job.

Zakariyya lived on the streets, refusing all offers of financial help from his father. Zakariyya blamed Day for the HeLa disaster, and also for the years of abuse he suffered in childhood. To earn money and a place to sleep, Zakariyya ended up enlisting himself as a voluntary research subject at Johns Hopkins.

In 1985, the family learned of a newly published book about HeLa contamination called A Conspiracy of Cells: One Woman’s Medical Legacy and the Scandal It Caused. Deborah got a copy and, flipping through it, soon found her mother’s picture. She studied that chapter and was horrified to find that her mother’s medical records were quoted in detail, revealing private information about Henrietta’s body and life. The author, Michael Gold, also included a ghastly description of Henrietta’s autopsy, describing “grayish white tumor globules” that “filled the corpse.”

Deborah was horrified at the invasion of her mother’s privacy, and she could not shake this new, detailed mental image of her mother’s tumors. Until now, she had been more sad and confused than angry; now she blamed the Johns Hopkins doctors for violating her mother’s privacy.

Years later, Rebecca Skloot tried to find out who gave Michael Gold those medical records, and why. It was unusual and unethical, but not illegal, to release a private person’s medical information in that way. It was unusual and unethical, but not illegal, for Michael Gold to publish them without seeking the family’s consent. When Rebecca tracked down Michael Gold and the Johns Hopkins doctors he interviewed, the doctors said they did not remember giving him Henrietta’s records. Gold, for his part, said that he did not remember who had had handed them over. He claimed that he had tried to call the Lacks family for consent but failed to find current phone numbers and addresses. He added:

And to be honest, the family wasn’t really my focus…I just thought [the records] might make some interesting color for the scientific story.

In any case, the Lacks family could not easily have prevented this breach of privacy, because “the dead have no right to privacy—even if part of them is still alive.”