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AIDS Orphans' Privacy Is Subject of Court Battle

Xiaoli, an orphan whose parents died of AIDS, has become the focus of the first lawsuit in China that accuses a newspaper of invading AIDS orphans' privacy.

The first hearing at Beijing's Chaoyang District Court was on April 25, and the second is scheduled for later this month, after which the court will deliberate and issue its ruling.

The plaintiff is Jin Wei, a professor at the Central Party School, and the defendant is Beijing-based China Times newspaper.

Jin filed the lawsuit on March 1 on behalf of Xiaoli, 19, after the paper used the full names of Xiaoli and her young brother, Xiaochuang, 15, along with their photos in a feature story published on December 2, 2005. (Xiaoli and Xiaochuang are not their real names.)

"This article, even with its good intentions, may harm the lives of the two children, who have suffered from prejudice and misery," Jin told China Daily.

While asking the court to throw out the case, Zhou Yong of Beijing Tianping Law Firm, the defendant's lawyer, argued at the hearing that the newspaper's coverage was to arouse public sympathy for Xiaoli and had not caused her any harm.

The China Times' feature told the story of Xiaoli and Xiaochuang, from a poor village in Henan Province's Xincai County, where illegal blood selling had caused serious HIV/AIDS infections among the villagers in the mid-1990s.

Their farmer parents contracted HIV and then AIDS a few years later. The mother died in 2000 and the father in August 2001. Xiaoli and Xiaochuang have tested negative for HIV.

Gao Yaojie, a renowned grass-roots HIV/AIDS expert in Zhengzhou, first read about Xiaoli in a feature in Southern Weekend in early 2001 that depicted the serious HIV/AIDS situation in Henan. She sent 300 yuan (US$37.50) in an attempt to help the children and went to meet Xiaoli in May of that year.

What Gao found when she visited was a girl crouched in the kitchen of their home, crying because she had nothing to eat. The money Gao had sent was apparently spent by an uncle.

When Xiaoli and Xiaochuang's father died three months later, relatives took over the house and other possessions, including 1,000 kilograms of wheat, a buffalo and a pig. Gao and other concerned volunteers, including Jin, took care of the children. Gao said Xiaochuang now lives with his adoptive family in east China's Shandong Province.

Gao and Jin ultimately adopted Xiaoli, and found a senior middle school for her in a small city in Henan Province, that they declined to reveal.

The events had the potential to bring Xiaoli some stability and even happiness, but that does not seem to be the case.

"Away from her tragic home, Xiaoli is still very depressed," Jin says. "Even now, five years after the death of her father, the girl said she often sees him in her dreams.

"Last summer, Xiaoli told me she dreamt of entering the dark rooms of her former home and her parents holding her hands, not letting her leave. The dream was full of horror."

But also last summer, with the help of a friend, Jin arranged for Xiaoli to work temporarily in an electronics factory in Zhejiang Province, where she earned 1,000 yuan (US$125).

The experience greatly reduced her stress. "For the first time since her parents became ill with HIV/AIDS, Xiaoli was happy because she could earn some money for herself," Jin said. "She now studies very hard and hopes to go to college."


Last autumn, Hu Kui, a reporter with China Times, came across Xiaoli's story and became interested in writing an update. During an interview he had arranged with Jin and Gao, Jin said, Hu had promised not to use Xiaoli's real name and photo. But Jin maintained the promise was not kept.

In court, Zhou Yong, China Times' lawyer, said the editor on duty did not know of the reporter's promise.

In the meantime, the newspaper reprimanded Hu for writing the story and deducted one month's bonus from his pay. Last month, Hu resigned from the newspaper for unspecified reasons. He was not available to be interviewed.

"Isn't keeping a promise to honor the privacy of interviewees a basic tenet of ethics for journalists?" Jin asked.

Both China Times and Zhou, its lawyer, declined to be interviewed.

Li Ying, a researcher at Tsinghua University's School of Journalism and Communications in Beijing, said that in reporting sensitive topics, protecting the names and photos of interviewees does not harm a media outlet's credibility.

The public wants to know the main facts, he said, instead of minor details such as names.

"In addition, the credibility (of a media outlet) is based on the way it honours the rights of interviewees, particularly the disadvantaged," Li said.

China Times' article about Xiaoli was posted by many Chinese websites, but so far, Gu Zengwei, a teacher who has the additional duty of supervising the class she is in, said it seemed Xiaoli's classmates have not read the story.

Jin and Gao still fear that Xiaoli's now relatively peaceful life might be disrupted again as a result of the China Times' article. They had already gone a long way to get her into the school.

"When the school leaders of Xiaoli learnt she was an HIV/AIDS orphan, they would not accept her," Jin said. "But after our repeated persuasion, they accepted her on the condition that her HIV/AIDS orphan status would not be released."

In a written statement to the court, Gu said if Xiaoli's status as an orphan of AIDS patients was known, the resulting uproar at the school would disturb the school's main mission of educating the students.

Jin quoted Xiaoli as saying: "I was frightened upon learning that my name and images were in a newspaper. If my classmates knew of my real status, everyone would shun me."

Jin added: "Parents of Xiaoli's schoolmates would not believe she is HIV/AIDS-free, and they would press the school authorities to expel Xiaoli out of fear that she might infect their children."

On March 1, the same day Jin and Gao filed the suit against China Times, the Regulation on Preventing and Treating HIV/AIDS took effect. The regulation, enacted by the State Council, stipulates that the names and health conditions of HIV/AIDS patients and their relatives not be publicized without written consent.

Fighting prejudice

The suit asks that the newspaper publish a full-page apology and pay Xiaoli 100,000 yuan (US$12,500). Jin said the suit is not to punish the newspaper, but to make the public aware that the right of privacy is crucial for HIV/AIDS patients and their relatives in a time when prejudice against the group remains high.

Even though research has concluded that interaction, such as eating or swimming together and mosquito bites, do not transmit HIV/AIDS - and that the main ways to infect others are through needle-sharing, sexual intercourse and from mother to infant during pregnancy educating the public on those facts is a difficult matter.

Jin said part of her teaching at the Central Party School, whose students are mostly senior leaders of provincial governments and central ministries, is meant to clear up misperceptions regarding HIV/AIDS.

Surveys of her students revealed that up to 50 percent of the students once believed that HIV/AIDS could be transmitted through handshakes or mosquito bites, Jin said.

Furthermore, Wang Ruotao, director of the bioethics committee at the Chinese Center for Disease Control, said that in many provinces, people generally believe the children of HIV/AIDS patients can transmit the disease.

But to Jin, the issue is not whether Xiaoli is infected by HIV/AIDS. Even those who have been infected should have the right to live normal lives, she said.

In January, the Chinese Ministry of Health, the World Health Organization and UNAIDS jointly reported that China had 650,000 people with HIV/AIDS in 2005. It is estimated that in China, 72,000 children lost at least one of their parents due to HIV/AIDS.

The prejudice against people with HIV/AIDS and their family members is considered a primary obstacle in helping them normalize their lives.

"Laws or regulations cannot force people to give up their prejudices against people with HIV/AIDS and their families," Wang said. "The best solution now is to maintain their privacy as much as possible."

(China Daily May 10, 2006)

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