BEIJING — It’s been more than four years since the university student walked into an HIV testing center where Cui Zixiao worked, but he still vividly remembers what happened next. Told he was HIV-positive, the young man broke down in tears.
“I embarrassed myself and my family, how should I face my life going forward?” the distraught student cried out.
In the three years that Cui worked at the Beijing center, he estimates he counseled 300 to 400 people newly diagnosed as HIV-positive. Many expressed similar guilt and shame over how their status would affect their families. Young adults in China feel a powerful cultural obligation to marry and have kids, but that life plan suddenly looks unattainable to people told they’re infected with HIV, particularly for the many who can’t afford or are unaware of treatments that would allow them to have uninfected children.
So when an ambitious scientist offered HIV-positive men and their spouses what seemed to be a way out of this despair, several hundred couples in China jumped at the chance, expressing interest in a clinical trial that promised to deliver them babies forever protected from HIV infections.
The trial, involving gene editing of embryos created through IVF, led to the claimed birth of twin girls last November and a second, apparently still-ongoing, pregnancy. The project has since been condemned by scientists worldwide as unethical human experimentation and Chinese authorities have halted the project while they investigate the scientist, He Jiankui.
The parents of the girls have not spoken to the media or been publicly identified, nor have any of the other couples that are part of the study; the consent form they signed stipulates that they’re not allowed to discuss the project with others. As a result, their motivations remain unknown. But Cui and Martin Yang, director of China AIDS Walk, told STAT that societal pressure to have children was likely an important factor — along with the parents’ desire to shield their children from the discrimination and ostracism people living with HIV endure in China.
Given these circumstances, Yang said, “there will always be a few hopefuls who want to try new technology.”
He Jiankui worked with a Beijing-based nationwide AIDS support network to recruit couples with an HIV-positive male and HIV-negative female. He quickly registered 200 families that expressed interest in the research. “For people living with HIV, the cure for AIDS is their simplest wish,” the founder of the group, who goes by the pseudonym Bai Hua, told Sanlian Life Weekly, a Chinese magazine.
The magazine reported, in an article that has been removed from its website, that one man who registered had learned he was HIV-positive two days before his wedding and felt he needed a baby to save his marriage. The experiment offered a way to do that, by paying for sperm washing and in vitro fertilization, procedures he otherwise couldn’t afford. But after learning more about the experiment and the risks that gene editing could pose to his baby, he decided against participating: “I don’t want to be a mouse,” he said.
Cui, 31, knows firsthand the pressures these couples face. He didn’t know what HIV was when he learned he was infected in 2012, and now he uses the pseudonym Cui Zixiao to hide his HIV-positive status from neighbors and relatives back in the rural village where he was raised. Cui said he wants to spare his parents, who are farmers, from being the talk of the village and facing harsh criticism.
He described another client of the HIV-testing center, a married father of one, who was having trouble accepting that he was HIV-positive and needed emotional support. Cui accompanied him for an afternoon after testing, and the father, aged 29, kept asking Cui the same questions: How long can he live, can he have more children, and how can he avoid transmitting the virus to his wife?
Cui said he explained that the government offers free antiretroviral medications to treat HIV and that once the viral load is low enough, an infected person is unable to transmit the virus and could conceive a child naturally.
The societal obligation to procreate in China is so strong partly because there’s an unwritten rule that parents’ responsibility to look after their offspring doesn’t end until they have grown up and started their own family.
At social gatherings, Chinese parents also often compare the progress and achievements of their children in different life stages, from schooling to marriage, which adds to the pressure to follow the traditional path. Any deviation requires an explanation.
There is also widespread discrimination against people living with HIV/AIDS, rooted in many people’s lack of knowledge and fear about the disease, said Yang of China AIDS Walk. People who are HIV-positive are marginalized, because others are fearful of contracting the virus through casual contact — though the virus is spread only through bodily fluids such as blood and semen.
Some also associate HIV infection with sexual promiscuity, which casts a shadow over an HIV-positive person in a sexually conservative society where sex education is lacking or not comprehensive. Cui said he never had sex ed in school. The teacher avoided the lesson when the time came, he said; instead, the teacher told the students to study on their own.
“Perhaps the male teacher was uncomfortable to teach sex ed in a class with mixed female and male students,” Cui said.
People living with HIV also face difficulties getting jobs and being admitted to hospitals in China not specialized in treating infectious diseases, said Yang, based on stories he’s gathered from people living with HIV. Medical staffs may be concerned about the possibility of contracting the virus or other infectious diseases during a medical procedure.