Privacy becomes core healthcare issue

PHOTO: Privacy becomes core healthcare issue

Request for ID prior to blood tests causes concern over data protection, reports Shi Yingying.

Meng Fei was confirmed HIV-positive in August, but decided to hold off telling his parents for fear of upsetting them. This month, that choice was taken out of his hands by the local center for disease control and prevention.

"My father received a phone call on March 1 by someone asking for my contact information. When he asked who it was, they told him and then revealed that I'd contracted HIV," said the 20-year-old, who spoke on condition of using an alias.

Meng was diagnosed after taking a blood test in Kunming, capital of Yunnan province, where he has worked as a trader for about a year. His family still lives in his native Fujian province.

"I didn't give anyone permission to tell my parents," he said. "None of my family knew I'm gay, nor did they have any clue I'm HIV-positive. I only gave my real name before the test (in Kunming) because they promised details about my condition would be kept confidential."

Concerns over the leaking of private health information is widespread in China so much so that when Xinhua News Agency reported in January that people in the Guangxi Zhuang autonomous region will be required to provide ID cards prior to HIV screening, there was public outcry.

Authorities in Guangxi later said the request will not be compulsory. However, after the news, more than 90 per cent of 7,728 Chinese web users polled by the International Treatment Preparedness Coalition said they would refuse preliminary screening if they were required by law to give their real names.

More than 94 per cent also disagreed with an article in the draft regulation that would allow medical centers to inform the sexual partners of patients about a positive HIV diagnosis after 30 days.

"I don't know about any other community, but adopting a real-name policy for voluntary (HIV) screening will definitely scare off (male homosexuals), who are considered a high-risk group," said Wang Jinye, 28, a master's student who volunteers at a gay rights NGO in Kunming.

"Generally speaking, there are two stages of a HIV test: Preliminary screening and confirmation," he said. "The majority of us (gay men) are against a real-name policy for preliminary screening, while about half would agree to giving out personal details if they are confirmed HIV-positive. Our priority leans toward privacy more than safety before confirmation, but it's the other way around after.

"You have to understand that we're facing double exposure: Being gay and possibly a carrier of HIV," Wang added.

Registering support

Many experts in the fields of medicine and law, however, have been advocating the introduction of a real-name system for HIV screening for some time.

Among them is Wang Yu, director of the Chinese Centers for Disease Control and Prevention, who has hailed it as a way to effectively prevent the spread of a fatal disease and help provide the infected with lifelong treatment.

"HIV carriers might spread the virus to others through unprotected sex or other channels. Should we protect their privacy or control the epidemic?" he said at a Ministry of Health news conference on Feb 8.

He added that ensuring authorities have access to the contact information of those infected will "solve the problem in a positive way, not hide it".

Yang Shaogang, a Shanghai attorney with experience in court cases related to HIV and AIDS, also agreed that requiring people to hand over their ID cards before getting screened would do more good than harm.

Last year, he represented a woman who sued her ex-boyfriend for infecting her with HIV. During the trial, the defendant admitted he had withheld news of his diagnosis during the couple's relationship.

"Although many people are worried about the risks of their personal data being leaked, this (Guangxi's real-name proposal) is necessary for maintaining the safety of society," he said. "In the drafted legislation, people infected with HIV should tell their sexual partners. There is no such specific article in Criminal Law about intentional transmission of HIV."

People are already required to present identification at centers that offer blood-screening services in Kunming and Beijing.

Statistics from the Beijing CDC show that since the regulation was introduced at the capital's 40 or so government-run clinics in July last year, the daily number of people going for preliminary screening has dropped from 12 per clinic to as few as three.

Meanwhile, in Yunnan, where the policy has been in place since 2007, more clinics are abandoning the practice of requesting ID cards.

"Just two out of every 12 CDCs or authorized clinics in the province follow the rule of requesting a client's name. The rest skip the ID check," said Chang Kun, director of He'erbutong, an NGO in Henan province that offers legal assistance to HIV carriers.

"I don't see any point of bringing in a regulation that medical center workers are forced to violate," he said, referring to Guangxi's upcoming legislation. "Protecting someone's privacy doesn't conflict with the State's desire to control the source of infection. The problem lies in people's lack of trust."

Keeping a secret

In remote rural areas, keeping anything confidential is a challenge, even something as personal as an HIV infection.

Du Guanghui tested positive for the virus in 2002 after being infected at a blood plasma collection point in his native Xinyang village, Henan.

"The local CDC confirmed the diagnosis, but they required another (higher level) clinic to confirm my identity by sending someone to my home," said the 43-year-old. "These people came into my neighborhood and asked for me. That was when my neighbors worked it out.

"Villagers believe doctors only come out when someone has a communicable disease and once one person in your community knows you've got AIDS, everybody knows."

Protecting people's privacy in large cities such as Beijing and Shanghai is not much easier, especially when it comes to applying for government benefits.

To qualify for a basic living allowance, residents must submit personal data to their local civil affairs bureau. However, Beijing lawyer Liu Yige said that in 2010 he handled the case of a man whose information including his HIV diagnosis was posted on a neighborhood bulletin board.

"It was a devastating blow for him," he said. "He's been changing his phone number ever since. Even we've lost contact with him."

Although the AIDS Prevention Act of 2009 states that medical centers should keep all information related to HIV confidential, Liu said there are no specific penalties for people who leak data.

Guy Taylor, program associate on advocacy and information management for UNAIDS, added that countries such as the United States and Britain have established comprehensive legal systems that protect the privacy of people who receive HIV tests.

"It's very important to make sure the staff are trained property so that they can offer quality counseling before and after the test," Taylor added.

Ethical reasons

Lu Hongzhou argued that cases such as Du's and the one described by Liu are rare, and that, a doctor, professional ethics prevent him from leaking personal information about patients.

"It's true there's no established punishment to prevent doctors from disclosing private data, just like there's no policy about giving compensation to doctors who accidentally contract HIV at the operating table," said the executive director of Shanghai Public Health Clinical Center.

"I'm for the real-name policy, even for preliminary screening," he said, explaining: "The reason is simple from the doctor's viewpoint: Some patients may get cold feet when facing confirmation and, if they provide false details, we would have problems contacting them. We couldn't offer them treatment or counseling."

According to the Communicable Disease Prevention Act, local CDCs are required to provide the personal data of patients who test positive for any of the 39 infectious illnesses listed. This includes HIV.

"By data, it means name, address, ID number and work place," Lu said. "Why do we record this? Well, because the situation will get out of control if we lose track of the source of infection. Then, it will no longer be about someone's privacy, it will be a problem for society."

An average of 48,000 new HIV and AIDS cases are discovered every year in China, he said, while the number of people who died last year of AIDS-related illnesses was about 28,000. (The last data published online by the Ministry of Health put the second figure at just over 9,000.)

"These people died because we just didn't find them early enough," Lu added.