Study Guide

The Immortal Life of Henrietta Lacks Chapter 26

By Rebecca Skloot

Chapter 26

Breach of Privacy (1980-1985)

  • Skloot updates us on Deborah's progress. She hit 30 and didn't develop cancer like her mother. She met and married James Pullum, a mechanic turned preacher.
  • After Pullum read the Rolling Stone article, he advised Deborah to get a lawyer, but she just wanted to get on with her life.
  • Meanwhile, Zakariyya (a.k.a. Joe) was released from jail. But things don't go well for him.
  • He still had serious anger issues, especially at Day, and couldn't hold down a job. He wound up living on the street right outside his father's door, refusing shelter from him.
  • Zakariyya participated in medical experiments at Hopkins for the money, but gave up when he started getting afraid they'd infect him with AIDS.
  • Pretty much the entire Lacks family struggled financially, and the boys turned to various illegal activities to make ends meet.
  • The next generation was affected, too. Deborah's son Alfred got himself on the wrong side of the law and went AWOL after joining the Marines.
  • Meanwhile, Deborah got hold of a book about HeLa cells and her mother's part in the story.
  • It was written by Michael Gold, who included seriously intimate details from her mom's medical record.
  • The book also contained a detailed description of Henrietta's painful death. Deborah couldn't take it.
  • Skloot says that she spoke with Michael Gold for the book, and that he didn't remember who gave him Henrietta's medical records. Both McKusick and Jones denied doing it.
  • Gold said he never intended to be indiscreet when including the medical records in his book. He just wanted to add the "human element" to it. Uh-huh.
  • But Maryland at this time had no laws law protecting patient confidentiality, so Gold was good, legally speaking. And you especially had no rights if you were dead.
  • Shmoop is amazed how things that would be unthinkable today were just business-as-usual not long ago.

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