Nature versus nurture. There have always been questions about which one contributes more to who we all become as adults. But imagine a future where the way you're raised is based on your essential nature, where your parents believe your genetic makeup is already pointing you to be a musician, or a doctor or a math professor, and they're just paving the way. All of this is based on the results of a DNA test that you've got just hours after your birth. In China, that future is happening now.
Welcome to Prognosis, Bloomberg's podcast about the intersection of health and technology and the unexpected places it's taking us. I'm your host, Michelle fay Cortes. Throughout this season, you've heard about all the ways the proliferation of healthcare data, especially from genetic testing, is creating opportunities and challenges. That includes privacy concerns about who gets the information and how it's used. But that all out embrace of DNA testing is perhaps
even more striking in China. This year alone, nearly four million Chinese are expected to take part in genetic testing to learn about their families and their health risks. But they're also pushing the boundaries of what these test results mean and what they can tell us about ourselves and our futures. From the very beginning of our lives. There
are questions about what is scientifically possible or provable. This leading edge of DNA determinism is happening in a country where the very concept of data privacy and what consumers want and expect is vastly different from Western countries. For this episode, Bloomberg's Jan hob reports with April Ma and Danielle Away across three cities in mainland China and Hong Kong. Here's one with the story. This jogging track in a sprawl in Beijing Park has become a regular hangout for
Lou Fey Long. The park overlooks the lake and it's nestled among blocks of residential high rises. Well, I usually tried to get out here to this park a few times a week to go running. The thirty six year old investor in Chinese web apps has made his workout here a priority after getting a genetics test online earlier this year. You know what, I have family history of diabetes. My father and my aunt both heaven and need insulent
to survive. I do have high blush sugar, so I wanted to see if I was also at risk through a genetics test to the test indicated he's four times more prone to diabetes than the average person, so he changed his diet and began following the exercise regimen that came with the test results and by bidding into that
test tube, blue Joint, China's DNA testing boom. China's consumer genetics market reached sales of about one point four billion dollars in and it's expected to grow nearly twenty percent a year through that's according to Research and Markets dot com. China is one of the fastest growing markets globally for DNA tests, and there's dozens of companies to choose from. There's even a twenty three and me similar sounding company,
twenty three mo funk. They range from big outfits like b GI Genomics that's reportedly the world's largest genetics research center, to lots of small startups like one Gene and gene Box. That company offers a very basic genome test for less than a dollar fifty cents. Yep, that's right, one dollar and fifty cents shipping included in justin o those three years nearly sixty million Chinese will have given a sample of their DNA by taking a consumer genetic test. That's
according to a Yeo, a Beijing research firm. The country is only beginning to grapple with a number of big questions like who has access to all that DNA data, how's it being used? And what happens when an authoritarian government potentially has access to the genetic blueprint for millions of its citizens. And the thorny issues over health data protection are surfacing as China becomes something of a wild West for genetics. That's thanks to a rapid and mostly
unchecked growth. Ethical debates were raised just this year after Chinese scientists put human brain genes into monkeys and induced mental illness in other gene edited primates. But the Chinese genetics experiment that caused the loudest international outcry was scientist Hagen quies gene editing of the embryos of twin girls last year. He said he edited their DNA to give them immunity to HIV infection. The scientific community condemned the
experiment and called it unethical, including Chinese scientists. Now, this kind of gene surgery is banned in so many countries. Medical and scientific community are very upset about this. They are outraged China set his work violated government rules. Still, the controversy exposed the lack of oversight in the country's genetics field. There's a sense that the government doesn't want to impose too many regulations because it wants the industry
to leap frog advances in the US and Europe. There's almost no regulation of the consumer market for DNA testing either. That makes it possible for Chinese companies to give out test results that go beyond what American companies would be allowed. This genetics boom is also happening against the backdrop of China stepping up mass surveillance of its citizens. Video camists are posted on most city blocks, millions of them, as China masses big databases of information on its own people.
There are questions how the growing consumer genetics industry might feed into that. And if you ask Chinese consumers about protecting their genetic code, what makes you you, most will shrug. This seems especially true among the many new parents who get their offspring sequenced in hopes of discovering innate skills and future potential. Supposedly written in their DNA. Tama Joe Sao Ying is playing with her two year old son in their Shanghai home. Days after little bai Ye was born,
his mom decided to have his DNA analyzed. Testing of babies in the womb and as newborns is one of the fastest growing sectors of the genomics business. Here what ina I did it for two reasons. One is to know about his talents in the future so that I can sell it direction for him. And then I wanted to know about his host risks, whether he has any genetic diseases, so that I can take preventive measures tell
you where I am. And with one point four billion people and competition intents for schools and jobs, parents are trying to give their little prints or princess every advantage possible. The company salesman pitched that the test can show whether genetically her day's old son is gifted in arts, music, or math. So what did the genetic crystal ball tell her? Travel ball pen The test results show that my son has talent in the arts, especially in music. It says
he's strong in creativity and weak in sports. I think it's very accurate. He's two years old now, and I have noticed that he can recognize us song after hearing it for the first time. If I asked him to harm the song, he can also do it into I'm surprised before the sales rep swabbed Little by his mouth with a cotton tip. His mother remembers signing paperwork. She thinks the paper might have been a disclosure for a woman.
If it's a piece of paper with writing on both sides, it contained information about what your DNA is used for. I didn't look at it carefully, so I don't know if there is any mention in the document that it can only be used for research and not for other purposes.
I didn't really pay attention. Joe, a former bank employee, sounds casual about protecting her son's genetic blueprint, and her nonchalance is in a way a reflection that Joe doesn't think that she has any real say over how the data may be passed around or used, or whether the government might one day access it. Jake don't see as an individual citizen, it's beyond our ability to control it.
We have little power. Joe and many other Chinese don't think about privacy and the safeguarding a private data in the same way as Westerners, and they're likely to view the government's reach into their lives as benign. Example, why because we are in China. If the government obtains the data and uses it for something, we don't seem to have the right to oppose it. But I believe if our government is doing it, it must be doing it for a good cost and will protect our personal data.
Even some Chinese law experts share the view that government access to individual data is not a big deal. Since the Indians, I think that when the state collects its citizens genetic information has a different purpose. Let's leaves shall know she's an associate professor who teaches classes in genetics law at Peaking University, one of China's top schools palamont In.
Commercial companies that are providing genetic testing services are going after the bottom line to make a profit, but the state is collecting the data for scientific research and for the cure of diseases. So personally I trust the state more because they don't have any commercial intentions. Such an open, unskeptical embrace of an authoritarian government's agenda main leave Westerners scratching their heads. But let's step back for a second.
The different cultural approaches to privacy comes down to the word itself. The Chinese word for privacy zine, and the characters that make up the word carry the connotations of hidden secrets. Tiffany Lee, who is a Resident Fellow at Yale Law Schools Information Society Project, points out that cultural norms around privacy on the mainland are often more about protecting a person from shame rather than the protection of individual liberty. The Chinese people are more open or less
sensitive about the privacy UH issue. F they are able to treade privacy, say for convenience for uh sifety for efficiency, in a lot of cases, they're willing to do that. That's Robin Lee, the founder of search engine bai Do. His comments at a forum in Beijing last year were widely criticized online by his countrymen, a sign that attitudes
may be shifting still. How Chinese approach data protection is often shaped by having grown up under a communist regime and within a Confucian culture that teaches the government will always enact policies for the common good. Contrast, that would the US new data protection law that came into effect last year that forced multinationals to scramble to comply. Its specifically outlines that the protection of personal data is a human right. China is also taking measures to better govern
how genetic data is handled. New rules that went into effect this month layout protections for consumers. They call for companies to inform customers about how their DNA data will be protected and give them the right to opt out at any time. The good thing is that we see that China try to implement this international standard, which is the so called prior informed consent for the use or preservation collection of the genetic data. That's g On Lee.
He's an associate law professor at the Chinese University of Hong Kong and he studies cyber law and privacy issues on the mainland. The government is trying to send a message to the market that is going to play tough for the violation of all this genetic information misuse. I do expect there will be some benchmark cases, probably in
the first two to three years. Last year, the government handed down finds the multinational farmer company Astra Zeneca and five domestic firms for sharing DNA samples or genetic data with other organizations in China and outside the country. The new rules prohibit the sale of genetic data except for scientific research and puts restrictions on foreign companies. But there's
one provision of the regulation that should raise concerns. And the other very prominently provision that I see from this slow is that they think that the government can have access to this genetic data. So for the purpose of public health, national security, and um public interests, the government can access these preserved genetic data. And it's actually not very clear. So what is the purpose of public health, national security and also public interests? National security can actually
define very browth that might include everything. So what kind of genetic information could be valuable to the government. The coffin might have much more information about your family relations or your entstry, or what you did before and even for for example, if anyone have any illegmate child that's easy to track. So if anyone or if any entity has access to that kind of data base or unlimited unbalanced access to that kind of data, that would be
ver very dangerous. Lee believes the government has huge databases or can get access to all sorts of information on its citizens financial records, did you pay your bills on time? Digital payments? How many luxury watches, did you buy speech and online activity on the internet. What if all that information could be combined on any one individual. Well, there is a plan to merge some of that. Some provinces have begun to implement what will become a nationwide social
credit system that melds personal financial data with behavior. Under this new system, every citizen is ranked if you owe money or don't pay your taxes, you run red lights, or don't pick up after your dog, then points are deducted. Good behavior and deeds like donating blood and money improve your score. Those with low credit scores may lose access to benefits or services, while those with good credit scores
are given priority and access. Already, Chinese have been prevented from buying plane and rail tickets because of their social credit scores. The system is still in its early days, and there's still debate whether the project is aimed at increasing surveillance or if it's China's unique way to incentivize citizens to uphold laws. Many Chinese are actually in favor of the system. They say it promotes good behavior and
engenders trust. With that unfolding on the ground, Lee is concerned what will happen as d NA is thrown into the mix. There is a possibility that all these different kinds of a personal data, including the biological one and digital one, will be connected together. Um. But we have no idea how that combination will be used against you
because the technology is still developing. For most of the people, I don't think they will feel very comfortable, um, if they have that kind of information accessed by any other parties other than yourselves. Um. Not to mention that a lot of information actually is not known to you yourselves. We were hard pressed to find experts in China raising concerns on the government's potential access to genetic data. That may be partly because the consumer genetics industry is still
relatively small and developing in the country. Well, I've never thought about how genetic testing can be used to maintain a stable society. That's lea shall known of Peaking University. Again, she's trying to figure out the critics, is ms and reservations that Westerners have about the Chinese government or police getting their hands on individual DNA information. How would that
be possible? Would they find out through gene tests which individuals have a genetic mutation that shows they're more likely to raise a rebellion. Is that what people in the West think that the Chinese government is going to predict which people are going to cause chaos through genetic testing and then put them under higher surveillance. Actually, some critics say some version of that scenario is already playing out.
The United Nations and the United States say more than one million weekers are being held enforced re education camps. There are Muslim ethnic group that's under surveillance. China says it's fighting separatism there in Cindio, this region of western China. UH the authorities are requiring people from the age of twelve to six to all be submitting the d n A samples um to be put in a searchable DNA database. That's Maya Wong, a senior researcher for Human Rights Watch
focused on China. The organization says it has documented that Chinese police have collected forty million DNA entries from ordinary Chinese not connected to crimes. The nonprofit says the nation's Ministry of Public Security started building a searchable national DNA database in the early two thousands as part of a
police project known as the Golden Shield. A lot of these AI systems then feed into the next layer of surveillance, which is the use of big data programs by the police to track monitor people's relationships, where they go and ins, for example, where this surveillance is most intrusive and visible.
That information is also used to um control people's movement and also to be analyzed who put certain people who are politically untrustworthy into political inductritional Asian camps um So in that context, the collection of DNA is problematic because it is part of a bigger program of mass surveillance and gathering big data of people with the explicit purpose of social control. With d NA, police can identify who's related to whom once an individual is flagged as suspicious
or a threat. She says, Entire families could also be marked. She says the biological information being collected here could be used to isolate a group of people and discriminate against them. China's Foreign Affairs Ministry didn't comment on our questions about DNA being gathered in Shinjang. At a recent press briefing, the Foreign Ministry spokesman said the camps are vocation training centers that counter terrorism, and with so many consumer genetic
companies collecting DNA data. There's concern that Chinese government could compel companies to turn data over with impunity. The rules allow for the Chinese government to basically access data without any procedures or legal oversight or any kind of you know, restrictions on what they can access and what they can take um and that has implications well for one billion people, but also some of these companies also work abroad. Here at a busy crosswalk in the manufacturing hub of Shenzen,
the surveillance of ordinary citizens is on public display. Across the street is a gigantic TV monitor that displays the photos of people who have gotten caught jaywalking. If the software can identify a jaywalker, they're assessed to find that sent us a text message to their phone. The city is also home to the headquarters of genetics Firmwigian, the popular consumer genetics testing company started into fourteen and has tested the DNA samples of about three hundred thousand users.
Company CEO Chung Gung welcomes the country's new rules on managing genetic data and says they won't disrupt business. The genetic data Regien collects from customers is only being used inside regien. We have not and will not share such data with other organizations. Chun says the government hasn't come knocking on its doors about the DNA data it's been collecting.
And what if the government ever asked for the data, whether it's a tech company or genetic testing company, we may have to provide data and situations where it's required, but so far there isn't an order on this matter. If there's a regulation requiring companies to do it, there's no way a company can refuse. One very significant project between the government and a genetics consumer company is unfolding
here in Shenzen. This hub of more than thirteen million people is also home to be Gi Genomics, one of the world's largest genome sequencing companies. The firm is also the biggest provider of prenatal genetic testing in China. The publicly listed company is also charged with running China's National Gene Bank, a huge database and repository of DNA and biological samples from millions of Chinese across the country, and it aspires to be the biggest such center in the world.
China spent nearly one billion dollars to fund the first phase and started the Gene Bank for health and disease research. Under the new rules, there's a high chance that no one will ever know when and how the government or law enforcement might invoke public health, national security, or public social interest reasons to access the genetic data stored there. The rules don't outline a process for checks on the government's access. B g I said customers data belonged to
the those clients and it respects national laws. In other Chinese cities, some private genetics companies are working with law enforcement. A handful of companies advertised as a selling point that they share children's DNA data with police. Chinese police launched a database in two thousand nine to collect DNA information of children. The program is aimed at preventing child kidnapping
and trafficking. Joe is a mom of two kids and says she wouldn't hesitate to add her children's genetic blueprint to police database. Just if your kid does go missing and there are still traffickers out there, that's pretty scary. We are unlimited as parents to protect our kids, and if there are other institutions and the government that are doing this together for our children, I'm okay with it.
Going to launch of heights do this okay, though the government's latest regulation on the Management of Genetic material addresses other Chinese fears. The provision band's foreign companies from collecting and storing the DNA of Chinese in the country or sending Chinese data overseas. After China's f d A find the company's last year from mishandling genetic data, articles circulated online that the DNA that were illegally exported could be used by foreign entities to harm Chinese. Here again is
Lou fe Long. He's the web app investor we first met on the jogging track at the beginning of our story. He's college educated and highly informed. He sees the pitfall of Chinese DNA in the wrong hands. Larger problem is if an organization and gets hold up these genes of our ethnicity or of Chinese people, they might be able to extract from it where are people are different from
others and then target those vulnerabilities. In Beijing, seven year old r curator Jung Tang Wawin is working in the studio. He and his family members have all given samples for genetic tests because they wanted to dig into their health risks. He's among the minority of consumers who's actually given some
thought to genetic data protection. He imagines the future in which the government could use DNA to dictate professions and life choices in I'm worried that if the government has control over genetic information, this data will be incorporated into each person's idea. Different groups will be separated by their genetic information. His fears may not be as paranoid as they sound. Chinese genetic testing companies now routinely give out results that tell customers if they're at risk for depression
or mental disorders. Parents test their newborns to see if they're likely to suffer from poor retention and memory. Yet, despite those fears, John is determined to call valuable information from his own DNA now before private companies or the government does. He says everyone should have health data on themselves and be able to enjoy the lighter side of it too, like knowing if your lineage can be traced back to an ancient emperor. So Nah, I know it
all comes with a price. There's no such thing as absolute privacy. It just depends on the value of the information. So I choose to overlook it because I'm after the health information and the entertainment from the testing. I have no control over the privacy of the information, and it's small proactive to get the results now wait for the day it will be accessed anyway. What this millennial's approach to data privacy is both fatalistic and proactive at the
same time. If he were in the US, he might be among those selling their DNA data in exchange for gift cards, cryptocurrency, or shares to any number of companies looking to buy it. Whatever China's consumer genetics market evolves into, it will be shaped by the fears, needs, and cultural values of more than a billion Chinese consumers, and there's a good chance it will look nothing like what we could ever imagine. Stay tuned, and that's it for the
second season of Prognosis. We hope you enjoyed hearing about all the promise and privacy issues that are swirling round healthcare data. We still want to hear from you, especially if you have a story about healthcare in the US or around the world. Find me on Twitter at aa Cortes or email me m Cortes at Bloomberg dot net. If you were a fan of this episode, please take a moment to rate and review us. It really helps new listeners find the show and don't forget to subscribe.
This episode is produced by Lindsay Cratterwell. Our story editor was Rick Shine. Special thanks to mung Ling Huang and Drew Armstrong. Francesca Leavia as head of Bloomberg Podcasts. Thanks and we'll see you next time.