Seeking Trial Enrollment, Oncologist Alienates Patient

Henrietta Lacks' Continuing Relevance

Nick Mulcahy

August 28, 2019

An oncologist's ambition to enroll her patient into a clinical trial generated distrust and touched on a historical hurt involving informed consent, according to the patient's daughter, who is also a medical student.

Shakkaura Kemet, MPH, who is studying medicine at the University of California, San Francisco (UCSF), accompanied her mom to the physician visit. She writes her account of the doctor–patient interaction in an essay published online today in The New England Journal of Medicine.

"Early on in that initial oncology appointment, the doctor asked my mother to enroll in a clinical trial of an [experimental] combination of chemotherapy drugs. Each drug worked well individually, she told us, and her team wanted to see whether they would work even better together," writes Kemet.

"She emphasized that the drugs were safe," Kemet continued.

"The silence that ensued while the doctor glossed over countless pages of side effects was terrifying and painful."

"Unbeknownst to her, the doctor had already lost our trust," Kemet writes.

The doctor, a woman, never explained the mother's diagnosis or prognosis during the visit — as was promised by the oncologist when Kemet and her mother made the appointment.

"Nothing had been done to address my mother's fears about her disease, its treatment, or her own mortality," adds Kemet.

"My mother had only one question: 'So, I do have cancer, then?' "

"Oh, yes," said the doctor.

Kemet asked the rest of the questions on behalf of her mom. Were there any nonexperimental treatments? Could they have time to think about the options? Yes, the doctor answered, and yes.

In the end, the mother decided to be treated with established, standard care for her early-stage cancer.

When the pair returned for the mother's first chemotherapy treatment, a nurse informed them that she had been assigned to another physician. The mother "never saw the first doctor again — a fact that only confirmed our suspicions," writes Kemet.

The suspicion: the mother was fodder for the oncologist's research cannon.

Kemet articulates it this way: "…it seemed that the oncologist saw her as a body whose value resided in the contribution it could make to future scientific discovery, not a patient in need of care."

More to the Story

If that was the end of the story, the essay may not have made the pages of the influential NEJM.

Soon after that patient visit with her mom, Kemet — who was an undergraduate at Harvard at the time of her mother's cancer diagnosis — was assigned to read The Immortal Life of Henrietta Lacks for a medical anthropology class. The book describes how a black woman's cancer cells, when cultivated in cell lines, were used to profit the big business of science for decades — without her informed consent.

Kemet and her mother are both black women. And the experience with the oncologist — and what they perceived as her slippery attempt to get their consent — revives some unpleasant memories, both personal and historical, about the institution of American medicine.

Kemet rattles off a few of the personal ones: The multiple times doctors have confused the mother's medical charts with those of other black female patients. Or the time a doctor dismissed her medication side effects as stress related. Or the time a physician empathetically asked about the mother's hypertension and diabetes — a nice gesture, except that she didn't have either disease.

Three years after her mom's initial oncology appointment, Kemet graduated from Harvard and moved onto medical school at UCSF. There, she was the copresident of the Student National Medical Association and invited the family of Henrietta Lacks to speak at her school.

Kemet worries the Lacks story might be dated and irrelevant to informed young people. Research helps her dismiss the worry.

"…black American patients still express greater concern than their white counterparts do about the likelihood of experiencing harm from participating in clinical trials," she writes.

And they should be concerned, she says, citing a study published last year in Health Affairs.

"A recent systematic review of studies that do not require informed consent found that black patients accounted for 29% of enrollees in such clinical trials even though they account for only 13% of the U.S. population," Kemet points out.

Finally, the UCSF medical student explains that what happened to her mom could happen to others — and not just other black women. Nevertheless, she and her mother saw the experience "through the lens of our history and personal experiences."

And that history includes Henrietta Lacks, who is still relevant, 60 years later: "Henrietta Lacks became a part of clinical research without giving her consent because her doctors failed to see her as fully human. More than half a century later, my mother chose not to participate in a clinical trial because she felt that her doctor failed her in the same way."

N Engl J Med. Published online August 29, 2019. Full text

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