“Illegal, immoral, deplorable” – and so critical to medical advancement

On Feb. 6, 1951, a poor African American tobacco farmer named Henrietta Lacks entered the ward for colored women at Johns Hopkins Hospital to begin treatment for invasive cervical cancer. While she was unconscious on the operating table, the surgeon on duty, Dr. Lawrence Wharton Jr., shaved a dime-sized piece of tissue from her tumor and another from the healthy part of her cervix.

Those tissues went on to generate the first “immortal” cell line, endlessly reproduced, studied, experimented with and passed around, still today, by scientists worldwide. Labeled “HeLa,” using the first letters of Lacks’ first and last names, the cells are among the most important tools in medicine, contributing to such advances as the polio vaccine, gene mapping, in vitro fertilization and many more. But Lacks — who died later that year — was never told why her cells were taken and never gave permission for them to be used as they have been. In addition, more than two decades passed before her family learned, by accident, about HeLa’s significance.

The Immortal Life of Henrietta Lacks by Rebecca Skloot
Author Rebecca Skloot took more than a decade to research and write The Immortal Life of Henrietta Lacks, which instantly hit the New York Times bestseller list and was named one of Amazon.com’s 100 Best Books to Read in a Lifetime.

The story of Henrietta Lacks, the scientific revolution that her cells continue to fuel and the ongoing issues of informed consent and medical/research ethics are the topics of the 2010 bestseller, The Immortal Life of Henrietta Lacks by Rebecca Skloot. The author and central Iowa community members discussed the book and its issues during a series of events on campus and in Des Moines this spring.

“I was struck with the idea of this woman who’d made so many important contributions to science, but scientists didn’t know who she was,” Skloot said during a panel discussion in DMU’s Olsen Center on April 2. “It’s important to show a human is behind every cell, every sample…There is not a single person in this room who has not benefited from this African American woman’s cells.”

Fellow panelist Jeffrey Gray, Ph.D., DMU’s vice president for research, noted that HeLa was the first cell line he viewed under a microscope. “Until I really paid attention to the story of Henrietta Lacks, I didn’t realize what we as a profession had done,” he said. “We neglected to talk with her and her next of kin on what we were doing with her cells. We failed to explain what we were doing and why it was important.”

That lack of informed consent led to further breaches of the Lacks family’s privacy when information from Henrietta’s medical records was published and the sequenced genome of her cells was posted on the Internet. In addition, while Johns Hopkins leaders deny the institution profited from the distribution of HeLa cells, the cells have led to new drugs and procedures that have generated billions of dollars — while many Lacks family members couldn’t afford health insurance.

Despite improvements in informed consent procedures and publicity of Henrietta Lacks’ story and other unethical medical cases, complicated questions persist. That calls on health care providers and researchers to maintain high standards of behavior and patient communication.

“You can get all the informed consent in the world, but you have to carry yourself at a level that’s
very ethical and pure and true,” said panelist Deborah Turner, M.D., J.D., FACOG, a gynecologic oncologist with Mercy Medical Center, Des Moines.

“Just because it’s legal doesn’t mean it’s right,” Skloot added. She pointed out that Henrietta had signed a form before her treatment, giving Johns Hopkins staff permission to “perform any operative procedures” in her “proper surgical care and treatment,” but it’s likely she didn’t understand the form and perhaps was unable to even read it.

“If you go to the hospital and you don’t speak English, you get a translator,” Skloot said, “but if you go and you don’t ‘speak science,’ you don’t get a science translator.”

Balancing patients’ rights and privacy with society’s desire to advance science and medicine is an ongoing challenge.

People ask me, ‘Was it right, or was it wrong?’, but there are no easy answers,” Skloot said. “My goal [with the book] was to complicate everyone’s feelings.”

“Who told you you could sell my spleen?”

Henrietta Lacks discussion panelists Deborah Turner, Rebecca Skloot, Jennifer Harvey and Jeffrey Gray
Panelists at a DMU discussion on April 2 were Deborah Turner, M.D., J.D., FACOG; author Rebecca Skloot; Jennifer Harvey, Ph.D., associate professor of religion at Drake University; and Jeffrey Gray, Ph.D.

That is the title of a chapter in The Immortal Life of Henrietta Lacks and also of a campus discussion led by Norma Hirsch, M.D., interim chair of behavioral medicine, and Denise Hill, J.D., M.P.A., associate professor of health care administration who also teaches in the Drake University Law School. The discussion encompassed the myriad complex questions relating to research.

“When we look at the HeLa case, is there ownership?” asked Hill, referring to the “immortal” cell line harvested in 1951, without consent, from cancer patient Henrietta Lacks. “Can we sell our organs and tissues? How informed is ‘informed,’ and is consent revocable? How long do the rights to donated tissues extend?”

Questions of ownership arise even when a patient gives consent to donate tissues. What happens if researchers want to use them for purposes beyond the original project described to the patient? What if the original researcher is no longer part of the research team, wants to take the specimens to another institution, or wants to sell them to a biotech company?

Hill and Hirsch also asked discussion participants to ponder complicated questions of patient privacy, in an age in which the sophistication of genetic testing allows tissue donors to be identified even when their specimens have been “de-identified.” Does this violate the privacy of the patient, his/her family members and descendants? Will it someday be possible, for example, for employers to access genomic databases for information on job candidates in order to avoid hiring those with “expensive” health conditions?

“It would be shocking to walk into a job interview and hear the employer say, ‘You have a predisposition to schizophrenia,’ which maybe you didn’t even know,” noted discussion participant Jeffrey Gray, Ph.D., DMU vice president for research.

Conflict of interest issues in specimen collection are rife, too, as research findings lead to profitable commercial products. Should researchers or commercial entities be able to withhold discoveries — including those supported with taxpayer dollars — to protect trade secrets or allow time for receipt of patents, even when public disclosure could foster additional research or benefit overall society?

“Research utilizing patients’ tissue and organ donations results in benefits including advances in disease detection, management, treatment and cures; in personalized medicine; and exchange in research,” Hill said. “But researchers’ interests may not align with those of the patient.”

Hirsch emphasized that medical professionals and researchers must be “very intentional” about gaining informed consent from patients. She also encouraged students to continue grappling with difficult questions relating to the legal and ethical implications of research.

“These issues are complicated, but not so complicated that we shouldn’t struggle to address them,” she said.

Perspectives from the DMU community

“Your cells will be the foundation of a remarkable number of medical advances, including the polio vaccine, the cancer drug tamoxifen, chemotherapy, gene mapping, in vitro fertilization, and treatments for influenza, leukemia and Parkinson’s disease. That’s what I’m going to do with your cells. Will you give them to me? Do you think you should get something in return from me for doing this with your cells? Is this informed consent — me telling you all the things I’m going to do with your cells? An excellent question is whether you speak the same language as I do. The answer, although I didn’t know Henrietta Lacks, my guess is no — she didn’t speak the same language as the doctors at Johns Hopkins. That isn’t informed consent.”
Jeffrey Gray, Ph.D., vice president for research

“HeLa was mass-produced to help researchers of cancer, herpes, leukemia, sexually transmitted diseases, Parkinson’s disease, appendicitis, hemophilia and gene mapping. But their harvest was illegal. The Lacks family had no awareness that Henrietta’s cells were being used for research. They didn’t understand the cloning of Henrietta’s cells… It’s important we keep in mind that Henrietta Lacks was a human being. She had a family. She was a mother, wife and daughter. She was a hard worker. And although she was limited in formal education, she was very intelligent.”
Richard Salas, Ph.D., director of multicultural affairs

“On Aug. 4, 1914, near Tipton Ford, MO, two trains collided. One was gasoline-powered, so an intense fire resulted. A Caucasian man pulled about eight people out of the wreckage and was considered a hero. One of those people was my maternal grandmother, who was half-white and pale in skin color…The oral story that came down to us was that when the man found out he had saved an African American, he got a lot of backfire from his family and the community. He was ridiculed to the point that he committed suicide. When we talk about questioning whether things happen due to race, there’s not always a clear explanation. But we all have biases.”
Carolyn Beverly, M.D., M.P.H., assistant professor of public health

“In our rare books room in the DMU library, we have medical textbooks and instructional materials from the ’40s and ’50s, so I started searching the collection for a code of ethics or some guidelines regarding human research subjects in the early 1950s. I didn’t find anything. And that in itself is telling. Physicians weren’t being taught about bioethics, because in those days there weren’t many established standards.”
Kelli Lydon, interlibrary loan coordinator

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