COMMENTARY

Does Oprah's HBO Movie Mislead About Past Medical Research?

Arthur L. Caplan, PhD

Disclosures

July 05, 2017

Hi. I'm Art Caplan. I teach medical ethics at the NYU School of Medicine. Some of you may have seen the HBO docudrama about the case of Henrietta Lacks. If you haven't seen it, it's probably online. I'm sure it may come to a medical school or a hospital near where you're working, should you decide at some point to take a look at this film.

The film is based on a book. The book tells the story of Henrietta Lacks, an African American woman who, at age 36, appeared at Johns Hopkins Hospital in 1951 and was diagnosed with cervical cancer. Doctors removed her tumor but then decided to examine it to see whether the cells from her tumor—cancer—would grow outside the body. They had long been looking for any human cells that might grow outside the body in artificial conditions, in dishes.

It turned out that hers did. Over the years, they grew those cells, which became the HeLa cells that we're familiar with in medical research and which some medical companies have used to test and develop products, bringing those companies a lot of money.

Sadly, Henrietta Lacks died from cervical cancer shortly after her surgery. Her children and grandchildren kept getting asked to come back to Johns Hopkins to get their cells blood-tested, and they couldn't figure out why. They didn't think they were sick. It turned out that scientists were trying to monitor the composition of their cells, looking to see whether any changes took place so they'd know if something had gone wrong in the HeLa cell line.

This made the family suspicious. Long story short, journalist Rebecca Skloot covered the story, explaining what happened with the HeLa cells, and turned that into the book [The Immortal Life of Henrietta Lacks] which [inspired] the Oprah Winfrey HBO movie.

I'm not here to do a review of the movie or the book. I do think there are some important points that have to be made about what happened to Henrietta Lacks. In 1951, there was plenty of racism in medicine. It's a time when we had segregated wards in many, many hospitals around the United States.

African American people had been subjected to all kinds of problems in terms of how they were treated and when they got [medical] attention. Medicine really had a racism problem. The removal of Henrietta Lacks's tumor, the doctors not telling her that it was done and that they were going to study the tumor—I have to say that there may have been racism, but more likely it was paternalism.

Doctors in 1951 were not getting permission to study tumors that they took out of anybody, black or white, rich or poor. In addition to that, at the time, patients were not even necessarily told that they had cancer; [the medical community] believed that that might frighten patients or make them suicidal.

The whole idea of telling the truth to patients about a grim diagnosis didn't come into play until many years later. I feel that bioethics did play something of a role in getting that behavior to change.

Yes, Henrietta Lacks's story is important. It did lead people to worry that maybe we were removing tissues without permission and studying them without compensation. What the movie doesn't say, and what the book doesn't say, is that we've changed the ethics of the practice of taking tissues like tumors from people's bodies.

Today there wouldn't be a Henrietta Lacks. We get permission. We absolutely tell people that we're going to take their tumor and study it. We also tell them that we're not going to give them any money if we make any products from it. There's basically just a waiver that says that compensation isn't going to happen even if something valuable comes from this. It's up to the patients to make a gift of it or not.

In many ways we have grappled with the abuse of Henrietta Lacks—not getting a good consent and not offering any kind of compensation, or leaving the whole matter vague with her descendants. What really is sad about the movie is that it may leave people in the African American community, or other minorities—or, for that matter, anybody who watches the show—with the attitude that doctors and researchers exploit patients, take tissues from them without permission, turn them into valuable products, and don't offer an explanation of whether they're going to get paid or not.

That may lead them not to take part in research. We need everybody in research—black and white, minority and majority—because the only way we're going to advance cures that help everybody is to have research participants come from all ethnicities, all races, all groups.

If you watch the film, you might come away thinking, "I'm not going to participate because those scientists, those doctors, they exploit people." They may have done so, but 1951 is a long time ago. We don't do that today. What we need to hear is a message about now and about the past, but if we're going to move into the future, participation in medical research is essential from all Americans.

I'm Art Caplan at NYU. Thank you for watching.

Talking Points: Does Oprah's HBO Movie Mislead About Past Medical Research?

Issues to consider:

  • Under current US federal guidelines, it is still possible to use specimens and to generate whole-genome sequencing data without the knowledge or permission of the person providing the sample, as long as the biospecimen meets the definition of de-identified.[1]

  • Some experts say that it's no longer possible to completely mask, or non-identify, samples, especially in genomics and computing.[1]

  • Some healthcare professionals say that the relationship between researchers and participants is evolving; seeking permission emphasizes that participants are partners, not just subjects.[1]

  • Since its establishment in 1951, the HeLa cell line has been used to study everything from influenza to in vitro fertilization—and HeLa cells can now be found in laboratories worldwide.[2]

  • Some healthcare professionals say that if clinicians didn't obtain consent when tissues were taken, researchers would later have to try to track down patients and seek permission to use the samples. If they couldn't do so, the specimens generally couldn't be used, which could narrow the universe of samples available for research.

  • Currently, if a patient's tumor tissue is collected at a hospital and then stored, a researcher who later wants to use it doesn't have to obtain consent, as long as the hospital has erased any information in its records that tie the sample to the patient.

  • Some professionals suggest that human biospecimens play a crucial role in scientific and medical advances, and that their continued widespread availability for research will be vital to achieving the goals of precision medicine.

  • Discoveries from biospecimen research have led to new understanding of human biology and targeted approaches to detecting and treating health conditions, as well as reducing the risk for future disease.

  • In oncology research, biospecimen use has increased dramatically in recent decades, helping illuminate molecular mechanisms that drive cancer and generating knowledge that has had major implications for risk assessment, diagnostic categorization, and novel therapeutic strategies.[3]

  • Some healthcare professionals are concerned that the collection, storage, and research use of biospecimens and data raise deep questions about informed consent, oversight, large-scale data sharing, privacy and confidentiality, commercialization, and access to research results.[3]

  • Many healthcare professionals contend that rarely do biospecimens obtained from one individual prove particularly valuable. More typically, scientific discovery and translation require the study of biospecimens and data from hundreds—if not hundreds of thousands—of people.[3]

  • When an investigator interacts with a person to collect biospecimens specifically for research (eg, for a particular study or to build a biobank), informed consent and Institutional Review Board oversight are required. However, when an investigator uses only biospecimens that have already been collected for another purpose (eg, for a clinical purpose, for an earlier study, or to build a biobank), no intervention or interaction with a person is involved.[3]

  • Experts say that genomic data can never be truly anonymized. Numerous studies show that it is possible to find out the identities of individuals whose genomic data were regarded as being deidentified.[3]

  • The US Department of Health and Human Services and 15 other federal agencies issued a final rule in January 2017 to update regulations that safeguard individuals who participate in research. Most provisions in the new rule will go into effect in 2018.[4]

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