The Osler Medical Symposium hosted a discussion on Tuesday, April 2 titled “Medical Ethics: Privacy and Patient Rights” in Hodson 110. Members of the symposium welcomed Cynda Rushton, a professor and founding member of the Berman Institute for Bioethics, and Veronica Robinson, who is the great-granddaughter of Henrietta Lacks. The granddaughter and great-great granddaughter of Henrietta Lacks were also at the event.
Lacks was a patient at the Hopkins Hospital in the early 1950s and became famous posthumously for her cells that doctors harvested in 1951 without her knowledge or consent. She ultimately passed away from cervical cancer on Oct. 4, 1951 at the age of 31. However, her legacy lived on. Lacks’ cells, most commonly referred to today as “HeLa” cells, are special because they were the first that could survive indefinitely in lab culture, and they have since been used in countless fields of medical research.
For decades after Lacks’ death, the Lacks family had no knowledge of the widespread dissemination or use of their matriarch’s cells until 1975, and they were not given a say in research conducted using HeLa cells until 2013, when the researchers sequenced the genome of HeLa cells without family permission. To this day, the family has received no monetary compensation for Lacks’ profound contribution to the medical field, even though the cells are marketed commercially.
One aspect of Lacks’ legacy emphasized during the discussion was the uncountable number of lives she has touched. During the talk, Robinson expressed pride in her great-grandmother’s contribution to humanity.
“If you have ever been vaccinated, there’s a piece of Henrietta in you,” Robinson said to the audience.
Rushton asked Robinson about her family’s experiences of being overlooked in favor of the advancement of scientific knowledge.
“When it came to research and medicine, I know that anything negative or anything bad that could happen would happen to the Lacks family first,” Robinson said.
Robinson described watching the pain her relatives felt when they had to exhume Henrietta Lacks’ body in order to share their story with the world. She explained how they sought to take back their story and decided to speak out in order to share their perspective and help prevent others from suffering in the same way.
Another topic that Rushton and Robinson explored was how people of color experience and receive health care. In particular, Robinson mentioned the fear among many African Americans that they would be used by medical professionals without their permission.
“The first story I ever heard in our home was that Johns Hopkins was the boogie monster. If you walked outside past a certain time, Johns Hopkins would scoop you up, and they would take you in their ward, and you would never be seen again,” Robinson said.
Rushton agreed that a culture of disbelief exists between the community and Hopkins. When asked, Robinson shared her view of how the relationship between people of color and Hopkins has changed in her lifetime.
“I still hear a lot of the stories of people being fearful to go to Hopkins, but I also see the change, especially since my family began to educate and advocate,” Robinson said.
Robinson strongly believes that the dialogues between people of color and health-care agents would serve as a solution to the lack of trust that currently exists between marginalized communities and the medical industry.
“You have to begin to meet patients where they eat, live, pray, work and congregate at to change that narrative,” Robinson said.
Robinson also explained that physicians and medical professionals should seek to understand their patients’ backgrounds.
“[Medical professionals should] say, ‘I know something bad happened, and I’m not going to discredit that. Tell me what it is that you need so that we can continue,’” Robinson offered. Rushton agreed that medical professionals should approach patient care with a sense of humility.
Another point that Robinson addressed was the alienation some patients feel when doctors speak in advanced medical terms. She explained how important it is for patients to understand exactly what is going to happen to them in treatment.
“The worst thing you can steal from somebody is their knowledge, their right to know. How can we make informed decisions if we’re not educated on the situation as a whole,” Robinson said.
Rushton and Robinson fielded a variety of questions from the audience, including how institutions can foster trust with marginalized populations. Robinson emphasized asking questions of patients, especially those who may not seem comfortable with the provider.
“Don’t let that patient walk out the door feeling like you just robbed them of their knowledge. Make sure that they understand,” Robinson said.
Rushton added to Robinson’s previous statement by saying that she feels medical practitioners are not listening enough.
“We’re so busy advancing our own point of view that we forget that we have one mouth and two ears, and we ought to speak in proportion to that,” Rushton said.
Another question addressed was how institutions can attempt to right the wrongs of the past. Robinson highlighted the reason her family sought reparations from Hopkins.
“My family never received even an apology... sometimes acknowledging that something was done wrong and an apology will be enough for that patient and that family,” Robinson said.
Robinson also described the complex relationship her family has with Hopkins as an institution and how that relationship has changed with the passing of time.
“At first, it was really hard for my family to associate itself with Hopkins... but now, after taking back our own history and having our own platform, it’s not hard at all. We’re very appreciative of everything her cells have done for the world, and we’re going to continue to commemorate and honor her in as many ways as we can,” Robinson told the audience.
Max White, a first-year medical student at Hopkins, explained his reason for attending the symposium in a brief interview with The News-Letter.
“You often hear about this story from other sources... but I feel like being able to hear the first-hand perspective of the family is really important,” White said.
White, similar to many others who attended the event, expressed shock that Hopkins has never apologized to the family.
“It’s kind of insidious how Hopkins has claimed the narrative of the family and appropriated it to say how great it is, without ever even having apologized or given reparations.”
Christina Boatwright, a sophomore studying Molecular and Cellular Biology and co-director of the Osler Medical Symposium, expressed similar sentiments.
“Hopkins has never issued them an apology, yet they are constructing a building in Henrietta Lacks’ name. I think institutions are too quick to distract from the situation... often, the simplest way to remedy a situation is an apology,” Boatwright said in an interview with The News-Letter.
Nivi Ram, a first-year medical student, was surprised to hear that the Lacks family experienced issues related to their privacy even in the current decade.
“Things have been happening as recently as 2013. I thought that things had been better since then, but it’s disheartening to hear that people are still taking advantage of patients,” Ram expressed in an interview with The News-Letter.
Following the discussion, Robinson shared how students can reconcile their affiliation with Hopkins and their criticism of its past.
“You can be affiliated [with Hopkins] and still right the wrongs,” Robinson said in an interview with The News-Letter. “Just because you go to a university doesn’t mean that the things they do are going to be ethical. You have to continue the narrative and continue the conversation... and you have to simply take hold of the situation and maybe start groups, and find out what can I do to right that wrong.”
Robinson closed the conversation by sharing her advice for future medical field professionals.
“Just remember that when you’re going in the field, you’re not just dealing with specimens; you’re dealing with somebody’s loved ones and to handle them the way you would want yours handled,” Robinson said.
“When you see something that is unethical, don’t just turn a blind eye to it. Remember that history has a way of repeating itself.”
The next time you go the hospital for a regular flu vaccination or undergo radiation therapy, remember that Henrietta Lacks’ cells are to thank for your medical care.