Legacy of “immortal” cells sparks college-wide ethics conversation
on November 10, 2014
The polio vaccine, in vitro fertilization, AIDS treatments, radiation and chemotherapy: these are among the most important medical advancements of the past century, but they have one more important thing in common. None would have been possible without the cells of Henrietta Lacks, an African-American woman who lived in 1940s Baltimore.
“I want her name to be as big as Rosa Parks or Harriett Tubman,” said Kim Lacks, Henrietta Lacks’ granddaughter, earlier this month before an appearance at Oakland’s Samuel Merritt University. Over the course of an evening, Kim Lacks and her sister, Jeri Lacks Whye, showed photos and told childhood stories to a rapt audience of 200 students, faculty, and staff as the healthcare professions university kicked off its first ever Community Reads program—an initiative that will encourage them all to read Lacks’ story together over the course of a year.
The world did not always know about Henrietta Lacks, and the lessons in medical ethics, informed consent, and human compassion to be gleaned from her family’s story are what had drawn the Lacks sisters and the audience together. Lacks died in 1951 of an especially virulent type of cervical cancer, and her doctors sampled some of her tumor without her permission during her treatment, an act not out of the ordinary in Jim Crow Baltimore. Those cells continued dividing indefinitely in a laboratory, the first in scientific history to do so. The resulting cell line, referred to in scientific circles as “HeLa,” has played a role in more than 74,000 scientific studies in the ensuing years, according to a 2013 New York Times article. In her extremely successful 2010 book The Immortal Life of Henrietta Lacks—the book that the Samuel Merritt community will read together this year— author Rebecca Skloot estimates that more HeLa cells have been grown outside of Lacks’ body than ever were in it.
Until the publication of Immortal Life, very little was known about Lacks herself (in fact, she was often mistakenly referred to as Helen Lane in the sporadic, modest media coverage that preceded the book). Lacks’ family had never been asked to consent to the use of her cells for research. They did not benefit from the enormously successful business side of HeLa cell culture, which generates thousands of dollars a year in sales to laboratories. And, despite their matriarch’s unwitting contributions to science, several of them lacked access to healthcare. But the book helped transform Lacks and her family into icons of the way healthcare disparities, racial tension, and economic inequality intersect in the United States.
Skloot’s deceptively simple way of weaving these issues together is what makes the book such a natural fit for Samuel Merritt’s purposes, said Marjorie Hammer, Assistant Professor of Pediatric and Mental Health Nursing and member of the school’s University Diversity Action Council. The UDAC chose Immortal Life for Community Reads, which will encourage all members of the university community— from the regents to the cleaning staff— to read the book together and use it as a jumping off point for discussions about healthcare inequality in the Bay Area. It is a salient topic for a school focused exclusively on healthcare, based in a city struggling with inequality, and with a stated goal of sending graduates into underserved communities.
Shirley Strong, Samuel Merritt’s Chief Diversity Officer, who has spearheaded the program with Hammer, hopes Immortal Life will help students from dissimilar backgrounds begin to think about fraught and complicated issues related to race, class, and healthcare. “You might think it’s somebody else’s issue if you’re white,” she said. “And if you’re a person of color you might think of it as your problem and no one else’s. This brings everybody in on the conversation.”
Hammer, Strong, and the UDAC cite Samuel Merritt’s lack of diversity as the reason such a conversation is important. The prevailing wisdom at the school and in public health circles is that the best way to serve underrepresented communities (namely, African-Americans and Latinos) is to recruit from them. But the “student body unfortunately is not overwhelmingly African-American or Latino; in fact, it’s rather Caucasian,” said Justin Berton, the school’s Associate Director of Media Relations. “We have to make this big effort to train our students if they’re not from a culturally diverse background.” Samuel Merritt’s student body is currently 27 percent Asian, 4 percent African-American, and 12 percent Hispanic. The school has made it a formal goal to increase both latter groups’ populations to 12.5 percent and runs a number of recruiting and mentoring programs to that end.
“I’ll be honest with you, our [people of color] voice is not represented at all,” said Shonda Williams, an African-American BSN nursing student from Oakland, expressing mixed feelings about Samuel Merritt’s diversity initiatives. But despite her frustrations, Williams said she was “excited, proud, encouraged” by the Community Reads program and the turnout for the kickoff event. “It’s very empowering—when you talk about healthcare disparities and inequality and look back at [Lacks],” she said, adding, “I lost my insurance in the middle of my pregnancy and had to go to Highland Clinic. I know how it is. As a nursing student, I go into these facilities and I see the difference in how these people are treated.” People of color, she meant, and patients with low income.
“You get angry when you see these things, disgusted,” Williams continued. “‘Why do I want to work in this field?’ But that’s exactly why. I know this is my community, where I’m supposed to be and where I can make a difference.”
Since the publication of Immortal Life, lectures and festivals honoring the woman behind HeLa have sprung up across the country; Kim Lacks and Lacks Whye are part of a group of six grand- and great-grandchildren who travel to these events to honor their matriarch. Their appearance at Samuel Merritt served as a powerful reminder of the wide gulf that frequently yawns between low-income people of color and the medical establishment—evident both in the lack of respect afforded Lacks and her descendants in harvesting and growing her cells without her consent and in the photos the sisters shared, portraying relatives who passed away early from diabetes and cancer or were debilitated by stroke. When asked if, in the wake of the book’s success, all of their family members now have access to healthcare, the sisters did not answer the question directly. Instead, an awkward look passed between them. “There’s much more that can be done and should be done,” Kim Lacks said. “But we try to focus on the positive.”
The two women also addressed questions about the family’s more recent problems with medical consent. In 2013, a group of German scientists who had used the wide availability of HeLa cells to map Lacks’ genome were preparing to publish the details—an act tantamount to making public private medical information about Lacks and her family without permission, again— when the news reached the family.
“They had been working on this for five years,” Kim Lacks said in an interview before the event, “and nobody reached out and said, you know, ‘This is what we’re doing, would you like to be involved, how do you feel about it?’ Nothing! So, yeah, it kind of felt like, ‘Okay, here we go again!’” In a sentiment later repeated to the Samuel Merritt audience, she added, “We don’t want to stop science. We still want science to advance with our grandmother’s contribution. But we have rights, and again with the privacy issues… give us a little respect here!”
Lacks Whye noted that the scientists ultimately chose not to publish the genome information. “They really didn’t have to, but right there they show you they have some type of compassion,” she said. “They took it down and said, ‘Okay, we want to wait until the family is comfortable with understanding what’s going on.’”
That the German group would consider publishing private genetic information without consent in 2013 shows a continued lack of communication between medical institutions and patients, Lacks Whye said. Starting to build this communication and changing students’ perspectives before they become full-fledged healthcare providers is one of the main goals of the Community Reads program this year. “We sometimes say a patient is ‘non-compliant,’” said Dr. Aara Amidi-Nouri, Chair of the BSN program and Director of Diversity for Samuel Merritt’s nursing division. “I want students who say, ‘Why? Do they have transportation? Maybe I won’t make an appointment at 8 a.m. for them if their bus line doesn’t start until then.’”
Strong hopes that reading Immortal Life together will inspire a community-wide conversation about healthcare “that focuses on integrity and treating people in a humane and compassionate and caring way,” she said. “This really serves as a vehicle, for students and all of us, to get deeper into the conversation.”
To that end, she and Hammer have developed programming throughout the year to engage and provoke conversation on Samuel Merritt’s three campuses, including an ongoing online discussion forum, lunchtime community book clubs, and special events focusing on medical ethics (“From Tuskegee to Henrietta Lacks to Ebola: Issues facing Healthcare Providers and Healthcare Consumers,” December 3) and organ donation (“Trust vs. Mistrust in Communities of Color,” February 10).
According to Student Services Coordinator Rachel Luna, about 50 people attended the first book club meeting on October 21 at the school’s San Mateo campus—a significant number, she noted, as the entire campus enrolls only about 200 students at a time. At the event, a mix of faculty, staff, and students drifted between interactive stations and pondered discussion questions posted around the room: How are the issues in this book relevant today? Should patient consent be required for research be done on tissues and cells?
“What I liked about them selecting this book is that I feel like there are a lot of entry points into it,” Luna said. “You might be someone who’s really into the science of it, or the history of it. You might have that personal connection. Any of those reasons might bring you into the book, and then once you’re in it you get to be exposed to the multifaceted issues it brings up.”
For Kim Lacks and Lacks Whye, maintaining their grandmother’s legacy, both as a medical miracle and a person, may be the most important issue of all as they work to spread her story around the country, and with it awareness of the importance of respect and transparency in modern medicine. We want “people to know that HeLa was Henrietta Lacks,” Lacks Whye said, “that she was a mother, she was a wife, she was a friend, she was an aunt. She was a human being.”
UPDATE: This story has been updated to reflect an event date change. The “From Tuskegee to Henrietta Lacks to Ebola: Issues facing Healthcare Providers and Healthcare Consumers” Community Reads event, which was originally scheduled for November 19, will now take place on December 3.
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