Do Early R.S.V. Vaccine Trials Have a Henrietta Lacks Story?
"Respiratory syncytial virus, or R.S.V., is a nasty bug. It’s the leading cause of hospitalizations among American infants and results in thousands of deaths among the elderly each year.
So earlier this year, after the Food and Drug Administration approved two vaccines for adults 60 and up, approved antibodies for babies and toddlers, and approved a vaccine for pregnant individuals to protect newborns, the new capability to effectively deal with R.S.V. was hailed as a medical breakthrough. And it is.
The new vaccines have been thoroughly tested in accordance with today’s clinical trial standards. But this breakthrough has a history, one tangled up in questions of medical ethics and racial exploitation.
A fascinating report published this week in Undark, a nonprofit digital magazine affiliated with M.I.T. (I’m a member of the magazine’s advisory board), found that in the 1960s, some of the first and youngest subjects to receive experimental shots, in a clinical trial of early attempts to develop R.S.V. vaccines, were Black and poor children, some in foster care. And though questions remain about what parents knew, “archival documents housed at the N.I.H. suggest that parents did not give informed consent — or in some cases, any consent at all — for their children to receive the largely untested shot.”
According to Undark’s reporting, it appears that for some of those children, rather than offering protection from the virus, an early experimental vaccine worsened it. Two Black children in the trial died, just one day apart, as the new year dawned in 1967, both in the same Washington, D.C., hospital, both little boys, neither living to see his second birthday.
One of them was 16-month-old Victor Marcellus King. As his big brother, Darius King, who was 5 years old at the time, recently told me, as each other’s only siblings, they were together pretty much every day and all the time; they slept in the same room.
His whole life, Mr. King said, he thought his brother died of pneumonia, and he blamed his stepfather, who had taken the child outside in the cold to show him off to friends. That impression remained until Undark’s Michael Schulson contacted him and told him that Victor’s death was most likely caused by an experimental R.S.V. vaccine. But that revelation came too late for a reconciliation — his stepfather died last year.
Of his brother, who died so young, Mr. King said, “My life would have turned out totally different if he had been a part of it.”
The other boy who died was 14-month-old Ross Otto Hambrick. I spoke to his sister, Sharlette Hambrick, who was also 5 at the time. She told me that she doesn’t remember her brother getting sick, or even his funeral. But, she said, “What I do remember vividly was the change in my mother.” She said her mom had been funny and outgoing, but after Ross’s death she became “super, super, super religious” and “she barely let us out of her sight.”
Ms. Hambrick said that when she was made aware that her brother’s death was most likely caused by the same experimental vaccine, her first reaction was anger. When she realized how helpful the new F.D.A.-approved vaccine would be, part of her was happy. Still, her anger didn’t subside.
Both siblings of the two boys expressed these complex feelings, but Mr. King also expressed the sorrowful resignation of a people — Black people — who have so often been mistreated, and he reflected on our country’s checkered history, including when it comes to medical ethics.
“That was the way America was,” he said, adding that the children who were given the experimental vaccine “were probably thought of as disposable.”
Indeed, the reporter, Mr. Schulson, who became interested in R.S.V. vaccine research last year after his own son was hospitalized with the virus, told me that what surprised him most during his work on the story was the relative lack of surprise that family members expressed to him when they learned about how an experimental vaccine most likely played a role in how two children died.
That lack of surprise is the scar tissue that Black Americans have built up — the knowledge that the worst is always possible. The mind and spirit continually make space for it, forever hoping, but preparing contingencies for hope’s inevitable betrayal.
We have learned this from history: Undark’s reporting about Victor and Ross calls to mind infamous cases of racism in the American medical establishment, such as the Tuskegee syphilis experiment, which treated Black people as disposable, and Henrietta Lacks, who was treated as dehumanized tissue.
Mr. Schulson reports that after the trial in which the boys died, the researchers who oversaw the study at Children’s Hospital in Washington, D.C., wrote an article in a scientific journal stating that they had received consent from the children’s parents. But Mr. Schulson reported that he did not find any signed forms and indicates that if parents did sign a consent form, they were probably not adequately informed of the trial’s risks. (When reached for comment, a National Institutes of Health spokesperson said, in part, that “the protections for participants in research have greatly evolved” over the past 60 years and that “N.I.H.-supported institutions are required to have numerous safeguards in place to protect human participants.”)
And, as Ms. Hambrick told me, “When it was shared with me that they had done an autopsy on him and that they had cut out part of his lungs and shared it with institutions all around the world, that hurt, because that was something that I don’t think my parents had any idea, or knew, that that was happening.”
Tissue samples were harvested from the boys’ dead bodies, Undark reports. Not only did researchers study the tissue samples, finding that the vaccine fatally altered the boys’ immune response, but “Over five decades, scientists publish dozens of papers drawing on clinical data of the boys who died.” In light of that, it’s hard not to think of the deaths of those boys as part of the journey that led to the breakthrough of today’s vaccines.
But as is often the case, the question comes down to the issues of justice, reparations and restoration: What are the families of the children involved in those experiments, particularly the families of Victor and Ross, now owed?
Undark reported that Victor’s family members recall the family receiving a modest payment after his death: “funeral expenses, plus $1,000 — around $9,000 today, adjusting for inflation.”
This year alone, sales of the new R.S.V. vaccines are expected to be in the billions of dollars.
How should the country make this right with these families? And how many more tragic and complicated stories are out there waiting to be discovered and told? As Mr. Schulson said, “I’m sure there are many more stories just like this one.”