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In Sickness and in Health

He Jiankui and bioethics, Chinese hospitals and patient violence, the coronavirus and lockdown of Wuhan, and politics during times of emergency.

Photo: Getty Images

Being ill is a process of reacquainting with one’s body. The functions taken for granted stop functioning. The parts forgotten make their presence felt. A person is forced to shift attention inward at one’s carnal existence, a most primitive identity that is no less bewildering.

Sometimes, the introspection takes on a more literal form. Light or sound penetrates the skin to reveal a hidden landscape. A cell is its own universe under the microscope, stars and clouds, winds and weather. Biology confronts the laws of physics, gets measured in chemistry, and is presented as math: charts and figures, statistical likelihoods that mean little in the case of one.

A body is not only what exists on the outside, and neither is a healthcare system. The inner workings of a Chinese hospital is a taxonomy of power. Peel away the smooth or raggedy exterior of waiting halls and exam rooms, machines and people, the smell of disinfectants and the cacophony of sounds, and one shall find pipes and organs, the invisible hand that direct the flow. From the length of a queue to the availability of a drug, from the chance to see a specialist to a bed in the ward, access is determined by financial privilege and personal connections. Envelopes of cash grease the wheel at almost every turn. The best doctors are reserved for the highest officials.

People may be equal in their final destination, but never on the journey. The gaunt end of the socioeconomic spectrum is evident outside major hospitals. Panhandlers sit next to cardboard sheets with heartbreaking descriptions of their maladies. Hustlers are quick to approach the distressed on their exit from the doctor, offering tips and directions to an elusive healer. Medical slums cower behind glistening buildings, where out-of-town patients and their caregivers live in squalor, the cost of travel or proper housing beyond their reach. Ads on walls and staircases find ways to regenerate, however many times they’re painted over: “A promised cure for a hundred diseases. Call this number.”

I spent a lot of time at Chinese hospitals as a young child. Never anything serious, my respiratory system struggled to develop an adequate defense to the dust and germs in our developing city. My mother worked as an elementary school teacher, and a few helpful parents from her class proved vital in me getting decent treatments.

True to her profession, my mother made each hospital visit a teaching moment. She would point out the less fortunate around us and remind me of my privileges. “You must study hard,” my mother said. Disease and poverty were not punishments for bad grades, but academic excellence was the only path out of scarcity.

My mother kept my medical bills inside a biscuit box. “Fragrant and crispy,” read the characters above a drawing of round, golden treats. The paper box stood on top of a bookshelf, too tall for me to reach. Every winter just before Lunar New Year, my mother would sit on a stool in the middle of the living room, empty the box on the floor, and with a heavy sigh, add up the total cost from the receipts. A fraction of the expense would get reimbursed by her school. By doing the work in front of me, my mother was offering a solemn lesson, that health was an asset we could not afford to lose.

 

Life in China is a perpetual battle with bureaucratic hurdles and offers constant reminders of structural injustices.

 

On Christmas Eve of 2019, a doctor named Yáng Wén 杨文 was killed by the son of an elderly patient in Beijing. The tragedy marked the latest casualty in a series of attacks against medical workers in China that has resulted in two dozen deaths over the past decade. According to a 2018 study by the Chinese Medical Doctor Association, two thirds of doctors in China have faced disputes with patients, half of which were violent. A more recent survey by the medical forum Ding Xiang Yuan reported that 85 percent of doctors have encountered violence at their hospital.

Despite a population of 1.4 billion, there are only a few million medical practitioners in China, most of whom have a bachelor’s degree or less. The problem of extreme shortage in qualified staff is compounded by the country’s size and uneven distribution of resources. Outside of first-tier cities and provincial capitals, well-trained doctors and modern medical facilities are few and far between.

Despite the overwhelming demand and staggering medical costs, the basic income for most doctors in China is relatively meager. Overworked and underpaid, many accept bribes to complement their salaries. With weak regulations and insufficient compensation for its workers, the Chinese government has incentivized the prevalence of “gray income” in the medical industry, a major source of public resentment.

Moreover, without adequate access to care or relevant education, the general public has a poor understanding of medicine, and can develop unrealistic expectations for its efficacy. A string of highly publicized scandals damaged the reputation of the medical profession, further sowing distrust between caregivers and their recipients.

Both doctors and patients are victims of the Chinese system. For the sick and their family members, seeking treatment is an obstacle course, with frustrations and indignities at every step. The difficulties are not exclusive to medicine, as life in China is a perpetual battle with bureaucratic hurdles and offers constant reminders of structural injustices. However, facing the acute duress of mortality, for the self or a loved one, a person can lose the ability of rational thought, and behave with complete disregard for civility, window dressing that only matters to the living and the well.

In the eyes of a desperate patient or a grieving relative, the doctor, however innocent, is a member of the privileged and the powerful, a representative of an unjust system that has repeatedly demanded and denied. The system cannot be touched, but the doctor is its most immediate proxy, a convenient outlet for accumulated anger. For the disenfranchised, the sense of powerlessness can become so absolute, the only course for reclaiming power is by inflicting harm, taking casualties to magnify one’s loss: If I die, you die with me.

Days after the murder of Yang Wen, the Chinese government passed a law to regulate healthcare and protect its workers. Set to go into effect on June 1, the comprehensive legislation is the country’s first of its type. It mandates more resources for local communities and underdeveloped regions, a righteous goal that will take time to implement, and is certain to face significant pushback from various interest groups.

The new law also emphasizes patient privacy and the safety of doctors, making it a crime to threaten or attack medical workers. Similar language may be found in a joint statement by the Chinese Ministry of Health and the Ministry of Public security in 2012, issued after the stabbing death of a medical intern by a patient in the northern city of Harbin. That announcement did not help Yang Wen or the other doctors hurt or killed in the years since, and it is unclear how the new bill may be different.

The tensions between doctors and patients in China cannot be alleviated without addressing structural inequalities. In the short-term, increasing security may be an obvious measure, as stated in the 2012 announcement. However, a heightened police presence can compromise privacy, and discourage people from seeking medical attention if they have a complicated relationship with law enforcement. More importantly, a hospital is a place of healing: it should not look like a prison. Armed guards and surveillance cameras take up resources, which could be better spent on treatment and education. It would not be the first time that a state at fault, instead of systematic reform, appropriates protection of the people for its own power.

 

He Jiankui had breached ethics and done harm, but he was punished first and foremost not for the human cost he incurred, but for sullying China’s image on the world stage.

 

As the last decade drew to a close, Chinese state media reported on December 30 that Hè Jiànkuí 贺建奎 had been sentenced to three years in prison plus a hefty fine. The U.S.-educated, Shenzhen-based scientist shocked the world in the fall of 2018 with the claim that his lab had created the world’s first humans from gene-edited embryos. The experiment was based on poorly-understood science, shoddily executed, and met with almost universal condemnation.

According to the prosecution, He recruited accomplices, forged documents, lied to patients, and tricked unsuspecting doctors into complicity. Two embryologists involved were convicted as well. Citing privacy concerns, the trial was closed to the public, and no evidence was released.

It is possible that He did all that he was accused of. It is implausible that he managed everything without the authorities’ notice. Had He been plotting a pro-democracy protest, he would most certainly have gotten a visit from state security before any mass mobilization could materialize. That the world’s most advanced surveillance state might pay more attention to political expression than a medical trial is an indictment of the Chinese government in itself.

In an authoritarian state like China, one survives by conforming to the state’s rules, and thrives by aligning with the state’s agenda. The official press that condemned He’s actions had, in as late as fall 2017, ran glowing portraits of the young scientist and his biotech start-up. The gene sequencer from his firm was lauded as an example of “indigenous innovation,” despite its core technology being licensed from a U.S. company that had gone bankrupt.

Weeks before the babies’ births became public, He claimed to have discussed the issue with a deputy district mayor of Shenzhen. In the hours after the news broke, People’s Daily Online published an article praising the experiment as a “historic breakthrough.” As the global outrage intensified, the report was soon deleted, and people and institutions close to He began distancing themselves.

He Jiankui had breached ethics and done harm, but he was punished first and foremost not for the human cost he incurred, but for the public embarrassment, for sullying China’s image on the world stage. A fundamental flaw of the carceral system is that by locking up the ill-behaved, a society also puts away the need for self-reflection. By convicting the individual, the Chinese state has protected the higher-ups and exonerated itself.

He Jiankui was sentenced under Article 336 of the Chinese Criminal Law for “practicing medicine illegally.” While the clause applies to this case, it does little to guide the future of gene-editing or biomedical research in China, where legal and ethical codes lag behind the advancements in science and technology.

In the report by Xinhua, the list of regulations He broke included, “if either side of the prospective parents have a serious infectious disease, the doctor cannot perform in vitro fertilization (IVF), plant an embryo, or conduct related treatments.”

He Jiankui recruited couples where the prospective father is HIV positive, and the mother is not, promising to give them HIV-immune children. Safe and effective measures exist that can prevent HIV transmission from parents to their babies, no gene-editing needed. However, there are relatively few fertility clinics in China, and the cost of IVF can be prohibitive. For an HIV-positive couple, they are likely to face an additional barrier due to the discriminatory policy.

At the gene-editing summit in Hong Kong in December 2018, the last time He spoke in public, he was asked if it was ethically responsible for doctors and scientists to defer decision-making to patients, especially when the treatment is new, its consequences unknown.

“I feel proud, actually,” He responded. “I feel proudest.” He described how the twins’ birth gave their father, who had “lost the hope for life,” renewed motivation to live, work, and provide. He Jiankui exploited the shame of the father and the desire of fatherhood in his patients, but it was the Chinese government’s misguided policies that caused the despair.

China now leads the world in the number of clinical trials using CRISPR-cas9 gene-editing technology to treat cancer and other major illnesses. It is a sign of the rapid progress the country has made in biomedicine, much thanks to state investments, but the hasty move also raises serious ethical concerns.

“If (the patients) have not received this treatment they will die,” said the president of a cancer hospital where one study was based. He was probably right. But being terminally ill does not reduce a person to an experimental subject, and there is more to medicine than prolonging life. How much did the patients understand about the potential risks? Were they given enough information about their rights?

“I’ve never worried about this,” a patient in the study told NPR. “I believe in science.”

 

They may be uncomfortable with how the research is conducted or how the technology is used, but they can assuage their guilty conscience by telling themselves that it is China, a country too big and foreign to understand.

 

Since the announcement of He Jiankui’s conviction, multiple prominent U.S. geneticists spoke in favor of the Chinese court’s decision. Jennifer Doudna, co-inventor of CRISPR-cas9 technology, told the Associated Press that she was concerned about the “mysterious legal process in China.” Nevertheless, she acknowledged the sentencing as a step in the right direction, and others expected a healthy deterrent effect.

I wonder how many genuinely believed that He got a fair trial, and that justice was served. It should not be news to anyone that China is an authoritarian state without the rule of law. Perhaps such common sense is obscured by my birth country’s economic rise. Perhaps I am being too cynical, and should give the American scientists credit for engagement in good faith. Perhaps deference to the Chinese legal system is a psychological defense measure: when the scientific community failed in self-regulation, the appearance of justice provides a convenient cover for personal culpability.

Despite what the Chinese court claimed, He was not particularly secretive about his gene-editing trial. He shared his intentions with a circle of confidants and updated several scientists in the U.S. on the progress of the experiment. Some expressed reservations, tried to dissuade him, or refused further communication. Others offered polite words of encouragement and some practical advice.

“First genome edited human baby — done! (in China, where else?)” wrote Stephen Quake in an email to what he described as an “extremely prominent scientist in the field.” Quake was He’s postdoctoral supervisor at Stanford and among the ones with advance knowledge of the experiment.

I find myself staring long and hard at the words in parentheses: in China, where else? In my years working as a Chinese scientist in the U.S., I have noticed many of my colleagues apply a different standard when it comes to science in China. They may be uncomfortable with how the research is conducted or how the technology is used, but they can assuage their guilty conscience by telling themselves that it is China, a country too big and foreign to understand, with a political system too opaque and corrupt to assume individual responsibility. The most socially conscious among them recognize that it is good for science to not be monopolized by the West, and are eager to help colleagues in China, convincing themselves that the benefit outweighs the cost.

In a country like the U.S., with relatively strict regulations on biomedical research, many of its scientists may decide against an experiment because it cannot get approval or funding, not because they are convinced it is the wrong thing to do. Morally conflicted and intellectually curious, some of them look to China, the “wild east” where anything goes, or so they believe.

Medicine requires a degree of objectifying the human body, and a group of people already seen as “the other” makes an easier study. The history of modern medicine in the U.S. is littered with the exploitation of black and brown bodies. When it comes to China, the geographical distance adds to an exoticized gaze. Culinary practices in parts of China are routinely caricatured in the western imagination, the mockery based on little more than a false sense of cultural superiority. In bioethics, legitimate criticism gets clouded by the prevalence of racist attitudes: To some, the Chinese people are barbarians playing with high-tech tools; their achievements and mishaps are all part of the spectacle.

 

It was not that the painful lessons from SARS had been forgotten after 17 years, but that in China, even common sense can give way to political calculations.

 

When the first headlines appeared at the beginning of January reporting a mysterious pneumonia in the central Chinese city of Wuhan, few people paid much attention. The government said it was nothing serious, and the official patient count barely increased for weeks. It was not until cases started emerging in other parts of China and overseas that the authorities changed discourse. The world was teetering toward a global epidemic, and the new strain of coronavirus could not be censored away.

As of now, thousands of cases have been confirmed, with over a hundred dead and many more in critical condition. The disease has spread to almost every province in China and 14 other countries, from Malaysia to France to the U.S., and scientists estimate up to 44,000 people may have been infected in Wuhan alone.

Three days before the Lunar New Year, the Chinese government put Wuhan on lockdown. The order came in the middle of the night, and by 10 am, no trains, planes, buses, or ferries were allowed to leave Wuhan. Public transit was suspended inside the city, and restrictions were placed on private motor vehicles.

Located by the middle stretch of the Yangtze River, Wuhan, the capital of Hubei province, is a megacity with a population of over 11 million. The largest quarantine in human history soon extended to other cities in Hubei and beyond, affecting 56 million people.

It is unclear how effective the drastic measure may be in containing the disease. In the month between the first known cases and the travel ban, an estimated five million people had left Wuhan. Often compared to Chicago but several times its size, Wuhan is a major transportation hub, and the weeks before the Lunar New Year is the busiest travel season in China.

“To my knowledge, trying to contain a city of 11 million people is new to science,” said Gauden Galea, the China representative of the World Health Organization. Galea acknowledged the “considerable” social and economic impacts of the quarantine. Nevertheless, “it demonstrates a very strong public health commitment and a willingness to take dramatic action.”

The Chinese government is certainly capable of dramatic action. The logic behind the lockdown bears a striking resemblance to the “one-child” policy. The birth restrictions reduced population growth, but it also led to demographic crises including aging and gender imbalance. For three and a half decades, the draconian rule caused a humanitarian catastrophe, with millions of forced abortions and sterilizations, child abandonment, and infanticide.

By accounting for only one variable in a complex scenario, the simplistic approach creates more problems than the one it’s trying to solve. Shutting down a city may slow the spread of a virus, but at what cost? Without means of transportation, how do people get groceries, take care of the elderly, or go to the hospital? Stretched thin on a good day, how are hospitals handling the sudden influx of patients, and what is the impact on care for other medical needs? When the disease has common, flu-like symptoms, what is the effect of the lockdown on the public psyche, and how are healthcare workers handling stress and fatigue? When desperate folks try to break the quarantine, what measures might be used against them?

In the aftermath of a natural disaster or terrorist attack, citizens turn to powerful organizations, usually the government, for help and protection. During a public health crisis, reliable institutions are especially critical. Without a trusted source for information, people resort to hearsay, and conspiracy theories fester.

Association with a wet market in some early cases led to a flurry of racist remarks toward Chinese food habits. Depending on where you look on social media, the pathogen either escaped from a laboratory in Wuhan or is a biological weapon developed by the U.S. A virus does not recognize human borders, but people are quick to draw lines between us and them, paranoia breeding discrimination.

For many, the Chinese authorities have little credibility left after their initial mismanagement. The attempted cover-up was reminiscent of the state’s reactions in the early days of the SARS epidemic. It was not that the painful lessons from SARS had been forgotten after 17 years, but that in China, even common sense can give way to political calculations.

With no scientific precedent, little proven efficacy, and potentially huge blowback, the quarantine of Wuhan and its neighboring cities is more about projecting state power than protecting public health. Even experts outside of China who question the medical wisdom of the policy are nevertheless impressed by the Chinese government’s ability to execute. “Logistically, it’s stunning, and it was done so quickly,” commented William Schaffner, a professor of infectious diseases and preventive medicine at Vanderbilt University.

The need to defend the infallible state, as well as individual interests as a matter of political survival, means that in the case of adverse outcomes, the government would be reluctant to admit its own errors — and more likely to double-down on the heavy-handed approach. The growing list of quarantined cities, and the further restrictions on movement inside Wuhan, are worrying signs of the dangerous trend. Tens of millions of people have become involuntary subjects in a state experiment, not knowing whom or what to believe.

 

The Chinese state has deployed the usual rhetoric, waging war against the epidemic and vowing victory. But the only battlefield is within a patient’s body, between the immune system and the virus.

 

Both sides of my family came from Hubei. They migrated east to Anhui, where I was born and raised. Many of my relatives still live in the afflicted province, though as far as I know none are in Wuhan.

The only time I spent in Hubei was as an infant. But it is still 老家 lǎojiā, the old home. As I scroll over social media and encounter video clips of anguished patients lining up in crowded hospitals, their accents remind me of my grandparents. It’s been so long. Something deep inside me swells from the chest, seeking an exit through the eyes.

We all process the world through the lens of our own experiences. How would I see the outbreak differently had my ties to its epicenter been closer or more distant? I feel selfish for even pondering this question. Death is an infinite gravitational well, bending time and space in its proximity. Nothing unites or divides us like the idea of loss.

“The military has arrived in Wuhan,” my mother said over the phone.

It was the first day in the Year of the Rat, the third after the lockdown order. I called my mother in China to wish her a happy new year, but there was only one topic on the top of our minds.

“Do you think it is a good thing that the military is used in a public health situation?” I asked.

My mother made me repeat the question. “Of course,” she said. “The military is the most disciplined. The most efficient.”

“The military is a violent organ of the state,” I pushed back. “The issue is not whether the military is capable. It is. The issue is why it is the military that is the most capable and has the most resources.”

I heard an audible gasp, and regretted voicing my views so bluntly. The Chinese state has deployed the usual rhetoric, waging war against the epidemic and vowing victory. But the only battlefield is within a patient’s body, between the immune system and the virus. It is a private matter. War as metaphor in the public sphere is always troubling. When everything is war, war becomes everything. It is the end of argument. Any cost can be justified as collateral.

I asked my mother what she thought of the travel ban. She said it’s the right thing to do. I pointed out that it’s too late and the disease had already spread. My mother said the government was being considerate, so that people had time to go back to their hometowns for Spring Festival. I listed my concerns over the social impact of a lockdown, but my mother told me not to worry.

“Everyone supports the quarantine. Inside Wuhan, life goes on as usual.”

“You do not live there!” I yelled through the speaker. “You do not know how the people in Wuhan feel!”

There was a pause on the other end of the line. “I’m very sorry,” my mother said. “You are right. I do not know.”

Her strained voice made me feel guilty. I had made my mother sad on the most important holiday of the year. I had no way of knowing if she said what she did about Wuhan because it was the official narrative, because she believed in it, or because she made herself believe in it so as to not feel so powerless.

My mother and I talked for a long time. I told her about the basic science behind an epidemic, how to assess the credibility of information, and how to avoid falling for rumors and lies. My mother asked me to speak slowly, so she could take notes. Two decades after I sat in her elementary school classroom, our roles had reversed, and with it our identities.

We shared thoughts about the most vulnerable in a city, the poor, the homeless, the rural migrants who did not get a chance to leave, the “invisible” population with the most tenuous relationship with the state. Wuhan is a relatively rich city with resources and infrastructure, but a higher level of urban development often exacerbates the disparity. The conversation was getting teary, and my mother shared a story from her childhood.

“I remember when I was little, your grandfather talked about fighting the flood with his classmates in college.”

In the summer of 1954, the Yangtze flooded to historic heights. Most of the impacted area was in Hubei, including the riverside city of Wuhan. A native of the neighboring town of Qichun, my grandfather was then a student at Wuhan University.

“The dam broke, and everybody went to help,” my mother continued. “Your grandfather could not swim, but he went anyway.”

I tried to picture my grandfather in his youth, with his slight build, one among many. Students. Soldiers. Workers. Ordinary people. They hauled sandbags and gravel against the raging tide. 15 years after the flood, a monument was erected in Wuhan to commemorate their bravery. Engraved on the marble were these words: “First, don’t fear hardship. Second, don’t fear death.”

A disaster brings out the worst and the best of humanity. I know there is no shortage of heroes in Wuhan, Hubei, or the rest of China. I know my people will survive as they have always survived, against floods, famine, war, and turmoil. But resilience does not justify suffering, and the current plight is no mere fault of nature.

The history of this epidemic is still being written, and we are all bearing witness. The water will remember what we have done, what we continue to do. The water always remembers.


Yangyang Cheng and the Science and China Column will return on the final Wednesday of every month. Last month:

I Save You in the Clouds

Yangyang Cheng

Yangyang Cheng is a postdoctoral research associate at Cornell University, and a member of the CMS experiment at the Large Hadron Collider. Born and raised in China, Cheng received her Ph.D. in physics from the University of Chicago in 2015, and her Bachelor’s in Science from the University of Science and Technology of China's School for the Gifted Young. Her writings have appeared in Foreign Policy, MIT Technology Review, ChinaFile, Bulletin of the Atomic Scientists, and other publications.

2 Comments

  1. Not Wumao Reply

    The real fault of the “Chinese System” lies in its scarcity. It lacks adequate funding for personnel and medical infrastructure, and its increasingly generous reimbursement scheme is financially unsustainable. It certainly could be argued that the limited resources should be better allocated, but healthcare for the elderly and the vulnerable is, in the eyes of the GDP-chasing government, economically unproductive. Enticing it is indeed to put the blame on the bureaucracy and some inherently unjust system for the ills rooted in economic backwardness per-capita, but don’t forget that the first-world standard of simultaneously affordable, timely and dignified medical care ties directly to a first-world income level. It sucks to be a developing country. It’s sucking less by the year, as income rises. For now though, it still suck.

    1. FRED GREENWOOD Reply

      I am in the States and born and educated in Canada-left as no jobs in my area of interest,but intended to go back.I never did go back,as there was such a diversity of everything here,and I was able to pursue my interests by changing both jobs and career paths and being self-employed.China will be hugely different in 20 years,more like the U.S.I started in Engineering and after early retirement, I trained myself in Biochemistry and translation of University Science into advanced healthcare,10-20 years ahead of the current system.I live in Silicon Valley,keep up on many areas,but not a Coder or Techie,rather an Engineering Systems approach.My typical day is hours watching CGTV and reading about China,3 hours studying and keeping up with new health-related science,walking,playing golf and chatting with people in 6 Continents.The U.S.
      has aneed for 6.5 Million Caregivers by 2030-many will come from China,also Doctors,Nurses,farmworkers and Travel Industry.We have many Chinese people here-Real Estate Sales and Investors,Engineers/Computer Science.Where I live we celebrate all the Chinese Holidays,and now have real Chinese take-out Food.Coders make up to $400,000 U.S.,and retire at age 27,disabled with back and hand injuries due to long hours. Hang in there-many here proud of hard you work and dedication.I am 80.

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