Henrietta Lacks' Medical Records Show the Lack of Privacy

This article is an excerpt from the Shortform summary of "The Immortal Life of Henrietta Lacks" by Rebecca Skloot. Shortform has the world's best summaries of books you should be reading.

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How were journalists able to view Henrietta Lacks’ medical records? What was the status of medical confidentiality and the privacy of patients? How did Henrietta’s family feel about Rebecca Skloot looking at her records?

Patient records were not always confidential under federal law, even when codes of ethics required privacy. Henrietta Lacks’ medical records were viewed by her family as well other journalists.

Read about the lack of privacy and Skloot’s reading of Henrietta Lacks’ medical records with Deborah’s permission.

Discovering the Initial Violation of Privacy

In 1985, while Deborah was struggling to deal with Alfred, she discovered a book written about the scientific community’s effort to contain the HeLa contamination. A chapter of the book drew heavily on Henrietta Lacks’ medical records—records which no one in the Lacks family had seen or had permitted others to see. The chapter narrated Henrietta’s excruciating decline and death in vivid detail, causing Deborah incredible anguish.

(When Skloot questioned Michael Gold, the journalist who’d written the book, he claimed that either McKusick or Jones had given him the medical records. When Skloot questioned Jones, Jones couldn’t remember the book or the journalist and denied his or McKusick’s sharing them.)

Lack of Confidentiality Requirements

At the time, medical records weren’t confidential. Although various ethical codes, including the American Medical Association Code of Ethics and the Hippocratic Oath, stipulated that patient information be kept confidential, there was no federal law regarding its confidentiality. And although some states had passed laws of their own to protect patient information, Maryland wasn’t one of them.

Deborah Views the Records

Deborah read her mother’s medical records. She discovered the name of the institution that her sister, Elsie (Lacks’s second child), had been committed to: Crownsville.

Mere hours after she got off the phone with the institution, she broke out in hives all over her body and became disoriented and short of breath. She went to the hospital, where her doctor discovered that her blood pressure was high enough to have caused a stroke.

Skloot Reads Henrietta Lacks’ Medical Records

In 2001, Skloot and Deborah traveled together to Crownsville, Maryland, where Elsie, Deborah’s older sister, had lived most of her life in what was then called the Hospital for the Negro Insane. (Deborah only knew the slightest details about her older sister.) Even though most of the records from the fifties and before had been destroyed, one of the few surviving volumes held an autopsy report for Elsie. Miraculously, it included a picture of Elsie. It was not a pleasant image, however: Elsie was visibly distraught, and her head was held at an unnatural angle by a pair of white hands.

At a hotel between Crownsville and Clover, Deborah finally allowed Skloot to look at her Henrietta Lacks’ medical records. The records were in total disarray, and Skloot set to organizing them. Minutes after Skloot closed the door to her room, Deborah reappeared: She wanted to look through the records with Skloot.

Henrietta Lacks’ medical records filled an entire bag. When Deborah upended the bag over the bed, Skloot saw a hundred-plus pages in complete disarray fall onto the coverlet. And Deborah refused to allow Skloot to photocopy the materials: She insisted that Skloot sort through the papers and take notes in front of her.

As they sorted through all of Henrietta Lacks’ medical records, Deborah alternated between excitement and panic; sometimes she would hand Skloot documents to read, other times hide documents under Skloot’s pillow. Finally, she curled up on Skloot’s bed, staring at the picture of Elsie and occasionally providing comment about what she thought Elsie must have been feeling.

After Deborah made Skloot promise not to copy down all the information from her mother’s records—she wanted some aspects of her mother to remain private—she went back to her room. She was still agitated, however, and she appeared intermittently at Skloot’s door, making a number of excuses for her visits. The final time she summoned Skloot to the door before finally going to sleep, she’d broken out in hives from anxiety.

Henrietta Lacks’ Medical Records Show the Lack of Privacy