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Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment. And as Howard Jones once wrote, “Hopkins, with its large indigent black population, had no dearth of clinical material.”
Radium causes mutations that can turn into cancer, and at high doses it can burn the skin off a person’s body. But it also kills cancer cells.
She got so much blood that one doctor wrote a note in her record stopping all transfusions “until her deficit with the blood bank was made up.”
Once scientists knew how many chromosomes people were supposed to have, they could tell when a person had too many or too few, which made it possible to diagnose genetic diseases. Researchers worldwide would soon begin identifying chromosomal disorders, discovering that patients with Down syndrome had an extra chromosome number 21, patients with Klinefelter syndrome had an extra sex chromosome, and those with Turner syndrome lacked all or part of one.
No one in the family had heard from her since. “Lillian converted to Puerto Rican,” Gladys said, holding the letter to her chest. I looked at Gary, who sat beside her. “Lillian’s skin was real light, even lighter than mom’s,” Gary explained. “She married a Puerto Rican somewhere in New York. Since she could pass, she disowned her blackness—converted to Puerto Rican because she didn’t want to be black no more.”
The plan was that Mandel would have doctors on his staff inject twenty-two JCDH patients with cancer cells for Southam. But when he instructed his staff to give the injections without telling patients they contained cancer cells, three young Jewish doctors refused, saying they wouldn’t conduct research on patients without their consent. All three knew about the research Nazis had done on Jewish prisoners. They also knew about the famous Nuremberg Trials.
A reporter from Science asked Southam why, if the injections were as safe as he swore they were, he didn’t inject himself. “Let’s face it,” Southam responded, “there are relatively few skilled cancer researchers, and it seemed stupid to take even the little risk.”
Southam’s lawyers argued, “If the whole profession is doing it, how can you call it ‘unprofessional conduct’?”
Bobbette seemed like a loud person being quiet, like a woman with an enormous laugh and temper who might erupt with either at any moment. She exuded Don’t mess with me, her face stern and staring straight ahead.
Them doctors never said nuthin about keepin her alive in no tubes or growin no cells. All they told me was they wanted to do a topsy see if they could help my children. And I’ve always just knowed this much: they is the doctor, and you got to go by what they say. I don’t know as much as they do.
Because of this history, black residents near Hopkins have long believed the hospital was built in a poor black neighborhood for the benefit of scientists—to give them easy access to potential research subjects. In fact, it was built for the benefit of Baltimore’s poor.
The research was part of a study examining lead abatement methods, and all families involved were black. The researchers had treated several homes to varying degrees, then encouraged landlords to rent those homes to families with children so they could then monitor the children’s lead levels.
He would become known as a vigilante who published “HeLa Hit Lists” in Science, listing any contaminated lines he found, along with the names of researchers who’d given him the cells. He didn’t warn researchers when he found that their cells had been contaminated with HeLa; he just published their names, the equivalent of having a scarlet H pasted on your lab door.
For Korn, the consent issue is overshadowed by a public responsibility to science: “I think people are morally obligated to allow their bits and pieces to be used to advance knowledge to help others. Since everybody benefits, everybody can accept the small risks of having their tissue scraps used in research.”
