Published online by Cambridge University Press: 18 December 2021
As the Chinese authorities investigated possible wrongdoing by Dr. Jiankui He, the families who participated in the experiment became swept up in the inquiry. Some Chinese social media influencers blamed the volunteers, saying that they should be burned or even shot to death. One couple who participated in the experiment made a bold rebuttal in a letter addressed to the judge who was overseeing the investigation: “Is the negative impact of these comments even greater than the research itself?” The couple applauded Dr. He for taking a risk while pointing to hypocrisy in Chinese society. In a formal letter to the court, they took aim at the most powerful person in the nation:
President Xi often claims that he cares for the people and their living conditions. Mother Peng [his wife] is the most beautiful representative of the HIV red ribbon. Is this all just a beautiful lie? Today there are people who are not scared of risk, who can put themselves in other people's shoes, and do something for people infected with HIV. Yet, they are being brutally crushed, pushed onto the cold sand beach by the tidal wave of comments, leaving them to die alone. What kind of dream should the China Dream be? Have the promises of harmony, love, and unity burst like bubbles vanishing into air?
The woman who was still pregnant from the experiment—known as P3 in the internal documents—was worried that her baby might be forcibly aborted by the authorities. In a letter addressed to the judge and court staff, she and her husband proclaimed: “Even if the child is disabled or unhealthy, we will take care of and treasure him/her.” The couple insisted that they fully understood the experimental risks and potential dangers before they signed up, saying that they were motivated by “feelings of contributing to science and society.” They wanted to protect the baby from the social stigma of HIV. Drugs can treat diseases like HIV, they argued, but “they can't cure prejudice!”
The expectant parents were not terribly apprehensive about giving birth to another baby who would join the ranks of the world's first genetically modified children. Tragically, however, by participating in this experiment they were exposed to humiliating treatment that overshadowed the disgrace of an HIV infection.