Two or Three Hundred Yuan Buys You a Gene Test, But That's Still Far From a Business

王毓婵 · · English translation

Can life be computed?

Can life be computed?

"We unscrewed the caps and, with great ceremony, foamed at the mouth together, then sealed them up and mailed them off." Last October, Bai Haiying and her girlfriend each sent off a 2ml saliva sample.

Three days later the package reached WeGene's lab in Pingshan District, on the far outskirts of Shenzhen. Their small test tubes were opened there and passed into a transfer chamber. Some twenty staff in white coats extracted, screened and processed the samples. In the end the saliva was picked up on the needle tip of an automated spotting machine and laid out on a chip alongside samples from 22 strangers, and the computation of their genetic code began.

Gene-testing kits waiting to be shipped out at WeGene's lab | Photo by QDaily

WeGene's automated spotting machine adding DNA to a chip | Photo by QDaily

Every day, thousands of saliva samples enter this 2,000-square-meter lab, and each one produces an 800-page lab report. The reports then go to another group of colleagues working downtown, who handle the last step of the gene-testing service: turning the technical language into a report and sending it to the person who was tested.

The report Bai Haiying got back carried the categories of information common to gene-testing services today. Her "ancestry composition," for instance, came out as 54.52% Northern Han Chinese, 40.17% Southern Han Chinese, 1.71% Gaoshan (Taiwanese indigenous), 1.63% Vietnamese Kinh and 1.44% Korean.

Her health-risk alerts said her risk of celiac disease was 4.45 times that of an average person, and that she might be lactose intolerant. Her risk of primary biliary cirrhosis was 3.66 times average, selective IgA deficiency 2.41 times, coronary heart disease 1.69 times…

Her fitness genes showed medium endurance, fairly strong explosive power, a large effect of diet on her weight and a medium effect of exercise on her weight…

When she mailed her sample back, Bai Haiying wasn't sure what kind of report she would get — only that it would probably include some disease-risk predictions. The report listed plenty of information, but she couldn't see anything she was supposed to do with it, so she set it aside and barely thought about it again for almost a year.

She took the test on a friend's recommendation. "Normally she's the type who reads insurance policies closely, asks people in the industry, and is forever nagging me to buy insurance." Bai Haiying felt that buying a gene test and buying insurance came from a similar frame of mind. She wasn't much invested in either, but she went along with the test in the spirit of "you should try new things."

Bai Haiying's gene test report

Bai Haiying's gene test report

Bai Haiying's gene test report

Zhang Tiantian, a Chinese woman working in the United States, was pulled in by friends the same way, and understood just as little about it. In 2017 she and a few friends group-bought 23Mofang gene-testing kits. She picked 23Mofang partly because the price matched what she was willing to pay, and partly because most of her friends had done 23andMe tests and she wanted to see whether the brands differed.

From a government-run frontier project to a casual consumer purchase — just 15 years

In 2003, biologists working on the Human Genome Project sequenced 98% of the human genome for the first time. The project took 13 years and cost $2.7 billion. According to the National Human Genome Research Institute, a single whole-genome sequencing cost about $1 billion at the time.

Four years later, Anne Wojcicki, a US biotech investor and then the wife of Google founder Sergey Brin, told ordinary consumers they could have a test like this too — all it took was $999 paid to her new company, 23andMe, and a tube of spit.

Today, what Bai Haiying paid for her gene test had fallen to 499 yuan — and hers was at the pricier end. Some comparable Chinese products now cost little more than 100 yuan.

The cliff-like fall in price is the main reason this service could move out of the lab and into the consumer market, but the force behind it comes from a handful of companies consumers never deal with directly.

In early 2007, whole-genome testing cost $10 million. By the end of 2008 it had dropped to nearly $100,000 — a 99% fall in two years.

The main driver of that plunge was the second-generation sequencing platform Illumina launched in 2007. Illumina's relationship with testing-service providers is rather like Intel's relationship with computer makers in the early days: the chip at WeGene that carried the saliva of Bai Haiying and 23 other people came from Illumina.

Comparable platforms on the market include Roche's FLX and Life Technologies' SOLiD. But Illumina has held a monopoly position throughout. According to 2016 figures from Analysys, Illumina had 83.9% of the entire market.

23andMe's $999 service back then and today's cheaper Chinese products are all "stripped-down" tests. They can report on a dozen or so disease risks and a small number of genomic sequences; they are not whole-genome tests.

As the sequencer makers rolled out new models, the cost of whole-genome sequencing fell fast, from $100,000 in 2008 to $10,000 in 2011.

The stripped-down consumer product got cheaper with it. Over ten years and five funding rounds, 23andMe's price went from $999 to $299 and finally stopped at $99.

In 2014, Illumina launched a new system, HiSeq X Ten, and announced that it had brought the cost of whole-genome sequencing down to $1,000. That $1,000 even covered instrument depreciation, DNA extraction, library preparation and the estimated labor costs of a typical high-throughput genomics lab.

Gene testing was now fully ready for the consumer market. In late 2014, Chinese gene-testing companies including WeGene, 23Mofang and Shuimu Gene were founded one after another.

Health is why many people buy a consumer gene test, but there is still little practical advice to act on

As Chen Gang sees it, most WeGene users get tested because they are "paying attention to their own health." Bai Haiying was one of them.

Bai Haiying's grandfather and father were both devotees of traditional Chinese medicine. When she was small the house had herbal medicine simmering year-round and subscribed to every kind of medical journal; in college she nearly enrolled in clinical medicine. She still listens to medical podcasts on schedule, and keeps the Merck Manual app on her phone.

Bai Haiying says her father always resisted Western medicine, to the point that she wasn't allowed to take Western drugs until college. "He thought Western medicine was partial, superficial and temporary," she said. But as she read more medical theory, she began to rebel against his view.

What turned Bai Haiying toward Western medicine was that its theories and practices can be checked against evidence. Her gene-test report suited that preference: every result came with a detailed scientific basis and an explanation of the relevant genetic locus, which put her at ease.

"I've never doubted the accuracy of gene testing. I think it's scientific and modest — the interpretation side still needs work, but it's a science that's making progress," Bai Haiying said.

23Mofang, WeGene and Shuimu Gene currently rank as China's top three by money raised and by user numbers. All three run their own labs, all list detailed scientific evidence in their reports, and all guarantee results better than 99% accurate.

She never doubted the accuracy. She was still not satisfied with what she got.

After learning she carried no major disease risks, Bai Haiying was left in two minds. "It's a good thing, but it also leaves me feeling I wasted my money." As for the obscure diseases she had never heard of — primary biliary cirrhosis, selective IgA deficiency — even though the system flagged a somewhat raised risk, she felt they "don't sound like serious illnesses," and to this day she has never looked up what they mean.

Bai Haiying also almost never used the medication advice in the report. Partly she couldn't follow it, and partly doctors don't seem to care much about a patient's gene test when they prescribe. When a doctor didn't ask, she sat quietly on the other side of the desk, waiting for him to scrawl out lines on the prescription pad that she couldn't read at all, then carried it silently to the pharmacy.

"If I had my own private doctor, or a community doctor, maybe I'd put this advice to use," Bai Haiying said.

Wu Weiwei, who also took a WeGene test, found her odds of depression were more than ten times average. She often feels harassed by depressive moods, and said the result "actually made me feel lighter, as if a lot of questions had found their answer" — even though a problem doesn't go away because it comes from your genes.

Both women spent money in the name of health, but neither dwelled on what the report said about disease and medication, and neither let it shape her later decisions much.

Yet the part they set aside may be the most sensitive content in the whole report.

In 2008, on an episode of The Oprah Winfrey Show devoted to 23andMe, the private physician Mehmet Oz described using the company's product: "My genetic test showed that my hereditary risk of prostate cancer is 30% lower than average, so I don't have to have those uncomfortable regular prostate exams anymore."

Oz's remark annoyed Amy McGuire, a medical ethicist at Baylor College of Medicine. "As an accomplished surgeon, Oz surely knows perfectly well that 23andMe's test confirms nothing, and that he can't make rigorous medical decisions on the basis of these results," McGuire said. He might have been trying to be funny, she said, but he could mislead a lot of people.

This is a fairly basic problem, and it has nothing to do with how accurate any particular test is. When a gene test shows a high disease risk, you won't necessarily get the disease; when it shows a low risk, you aren't necessarily safe from it.

Li Xinying, a researcher at the Chinese Academy of Sciences' Laboratory of Health and Genetic Psychology, told QDaily that human diseases and abilities are shaped by many factors through very complex mechanisms, and that apart from a few individual diseases, gene testing cannot predict them with 100% accuracy. Diseases are also affected by heredity to different degrees, so the results are worth different amounts as a guide.

"For most diseases, the results are valuable in guiding a user's medical decisions and daily life. For example, if the result shows you have a high genetic risk of colorectal cancer, then in daily life you should avoid its risk factors, get regular colonoscopies and so on," Li Xinying said. Such a test lets you keep possible future illnesses in mind, which gives day-to-day healthcare and health management a clearer purpose. But don't let the report frighten you either: it only says you are more likely than other people to get the disease, not that getting it is a high-probability event.

At the same time, nearly every expert — McGuire included — and people working at companies like 23andMe agree that the logic does not run in reverse: you can't skip screening because your risk of some disease is low. What is fairly certain is that skipping regular checkups makes the disease much harder to treat once it appears, even if that subconscious temptation is hard to avoid.

Chinese regulations have no clear definition on this question yet, but the FDA's approach is worth looking at. When the FDA first shut down 23andMe's service in 2013, it classified that service as over-the-counter, direct-to-consumer (DTC) testing. The stated reason for the shutdown was that 23andMe's saliva collection kit and personal genome service had no marketing clearance or approval under the Federal Food, Drug, and Cosmetic Act (the FD&C Act).

With the consumer gene-testing industry, the FDA went through a cycle of clamping down and then loosening up. After shutting down 23andMe, it spent three years gradually setting rules and reopening testing for a number of conditions.

Key Moments for 23andMe

2006.04

Company founded, product priced at $999

2007.05

Raises $9 million in Series A funding

2009.06

Raises $12.6 million in Series B funding

2010.11

Raises $22 million in Series C funding

2011.01

Raises $9 million in Series C+ funding

2012.05

Product price drops to $299

2012.12

Raises $57.95 million in Series D funding

2012.12

Product price drops to $99

2013.11

FDA halts 23andMe's direct-to-consumer gene-testing service

2014.07

Receives a $1.4 million grant

2015.02

FDA approves the first consumer genetic carrier test — for Bloom syndrome — and authorizes 23andMe to offer it

2015.07

Raises $79.08 million in Series E funding

2015.10

Raises $115 million in Series E+ funding

2017.04

FDA opens up testing for 10 more diseases and authorizes 23andMe to offer it

2018.03

FDA approves the first DTC cancer-risk test product

In 2015 the FDA approved the first consumer genetic carrier test — for Bloom syndrome — and authorized 23andMe to offer it; in 2017 it opened up testing for another 10 diseases; in 2018 it approved the first DTC cancer-risk test product. But the FDA also stated plainly that consumers and health professionals should not use 23andMe's results to make treatment decisions, including anti-hormone therapy or the preventive removal of breasts or ovaries — decisions that require confirmatory testing and genetic counseling.

During the same period the FDA approved the saliva collection tube made by DNA Genotek, the only company to get such approval, and IMPACT, the next-generation-sequencing multi-gene analysis platform from the MSK Cancer Center in New York, which set a standard for consumer gene-testing services.

The FDA is approving consumer gene-testing services faster and faster, a trend that excites people in the Chinese industry. WeGene has stuck with the $20-a-piece "FDA saliva collection tube," even though some saliva tubes wholesale on 1688 for as little as 10 yuan.

But with regulation in China still largely absent, some in the business are stepping carefully around medical risk.

One way out is to sell analysis of things like fitness and psychology.

Guo Tingting, CEO of Gese, has said her company "will not, for the foreseeable future, touch two areas: 1. risk prediction for common diseases; 2. 'talent' prediction for minors."

Gese is also a gene-testing company, but it concentrates on users' psychological and behavioral traits. What it tests includes stress tolerance, emotional expression, degree of introversion, capacity for delayed gratification and even aptitude for romance — the kind of thing that recalls the little "personality quizzes" people used to take on QQ Zone.

"Psychology is a serious science, and the field has rigorous definitions for how genes affect psychological traits," Guo Tingting said. Genes influence psychological traits no less than they influence disease or athletic ability; the figure usually reaches 40-60%, a moderate level of heritability. And the better and freer someone's living environment, the greater the influence of genes.

But the mechanisms behind psychology and behavior are more complex than those behind disease. Li Xinying's view: "Given where research in this field currently stands, we still can't use genes to judge a person's personality, emotions, stress tolerance or style of romance very well."

In less sensitive categories — psychology, diet, fitness — the question the testing companies hear most from consumers is a doubtful one: why doesn't the result match what I know about myself?

Bai Haiying's cousin Zheng Wei also took a WeGene test. His report said diet had a "medium" effect on his weight, which made him skeptical. "The way I read 'medium' is that eating doesn't make me gain weight easily, but in fact the moment I have late-night snacks and beer I put on weight."

Biologically, a person's current state is set by genes and environment together. It is hard for a consumer to use his own outward traits to prove a gene test right or wrong. If a report says someone doesn't tan easily, that doesn't mean he really is pale — perhaps years of outdoor exercise changed his skin. If it says someone doesn't gain weight easily, that doesn't mean he really is thin — perhaps he eats junk food and hates exercise.

Here the testing company has plenty of room to explain, and the consumer has very little.

Often the results simply reinforce what the person already believed. Zheng Wei's report said he had "weak protection of the knee's anterior cruciate ligament," which matched what he had suspected. "I'll be more careful when I exercise from now on."

Zhang Tiantian's 23Mofang report said that for her "exercise produces fast weight-loss results," which made her loosen her limit on calories. "I started eating more."

The test itself doesn't make money, and nobody has worked out what to sell next

Chen Gang, formerly a vice president at BGI Tech, joined WeGene as a co-founder in 2015. A year later, answering a question about 23andMe on Zhihu, he half-jokingly called what he was doing a "knock-off" of 23andMe.

Most Chinese gene-testing companies have indeed copied 23andMe's model almost exactly: the consumer buys a kit, spits into it, mails it back, and waits two to three weeks for the report.

They have likewise all chosen testing equipment from Illumina or Thermo Fisher. The testing itself asks little of a startup beyond money.

With off-the-shelf hardware for the technology and investment money in everyone's pocket, competition among the testing companies could only turn into a price war.

According to the China Biotechnology Information Network, China's gene-testing industry disclosed 60 funding events in 2017, 27 of them with a stated amount; total disclosed funding for the year topped 6.8 billion yuan, with 19 individual rounds above 100 million yuan each.

23Mofang, which has raised the most rounds, has completed six for a total of 234.5 million yuan, with backers including marquee names like SoftBank and Matrix Partners China. When it launched in 2015 its product cost 999 yuan; that fell to 499, then to 299, with discounts for buying in bulk.

WeGene and Shuimu Gene, with slightly fewer rounds behind them, price their basic products at around 499 yuan, though holiday promotions can take one or two hundred yuan off.

Funding History of Major Chinese Gene-Testing Companies

2015.03

23Mofang raises 5 million yuan in angel funding

2015.08

WeGene raises several million yuan in Series A funding

2016.01

23Mofang raises 10 million yuan in Pre-A funding

2017.01

23Mofang raises 20 million yuan in Series A funding

2017.01

Shuimu Gene raises several million yuan in angel funding

2017.08

23Mofang raises 40 million yuan in Series B funding

2018.01

WeGene raises an undisclosed amount in Series B funding

2018.01

Shuimu Gene raises tens of millions of yuan in Series A funding

2018.03

23Mofang raises 100 million yuan in Series B2 funding

2018.05

23Mofang raises 62 million yuan in Series B3 funding

Meanwhile 23andMe has held its basic product at $99 for more than five years; since 2014 the company has used a chip it developed itself to cut costs.

An article on Huxiu once quoted an entrepreneur in the field: "A gene collection kit costs tens of yuan, shipping costs tens of yuan more, and testing and labor add a few hundred yuan on top. If you price it at a few hundred yuan, the room for profit is extremely limited. It isn't a particularly good business model."

Asked about doubts over cost, WeGene's Chen Gang answered: "There's actually no necessary relationship between a product's cost and its price — in the end price is set by value." But he also admitted, "Right now we really are doing this right at cost."

Every test report is produced in two parts: testing and interpretation. Testing companies with capital all use similar equipment from the big manufacturers, so there is little difference on the testing side. Interpretation is where they differ.

Gese DNA's product costs 499 yuan, but users can get up to 300 yuan back by taking part in "paid research," bringing the real price to 199 yuan. "Under our current pricing, our room for profit isn't large, and there isn't much room left to cut prices in the future either. A product's cost is mainly four things — hardware, testing, logistics and development. As things stand, unless technology brings testing costs down, we can't cut the price further and still guarantee product quality," said Guo Tingting.

Testing companies also can't do what Didi did — subsidize the first few orders and make money on later ones. Barring a mutation in unusual circumstances, a person's genetic information never changes, so one gene test is all anyone will ever need. This is an "ultra-one-time" business: you finish, you leave.

Having taken market share with low prices, the testing companies share one wish — keep the users and give them life guidance based on their reports. Shuimu Gene, for instance, lets a consumer who has received a report pick a suitable "life coach" on the platform, who advises on diet and nutrition, exercise, sleep and other habits.

Shuimu Gene CEO Wang Xiaokang describes the "life coach" as an "AI-plus-human health assistant." "Shuimu Gene wants to become a gateway into 'big health,'" Wang Xiaokang said; once you know a user's genetic information, providing them with targeted products and services is one direction the company plans to take.

QDaily used Shuimu Gene's product as a customer. After the report arrived, the app pushed several messages a day, mostly health, exercise, diet and sleep advice based on the results. So far we have found no paid follow-on service.

Ancestry analysis, still filling in data gaps, has changed some lives

Bai Haiying wasn't satisfied with her results, and her life changed because of them anyway.

A small part of Bai Haiying's ancestry came from Korea and a small part from Vietnam's Kinh people, which set her imagining. "Even though I don't have any exotic features and this result won't affect my life in any way, I still find it pretty interesting."

She sometimes looks in on the ancestry forum on WeGene's platform, which is always the liveliest corner of the community. Posts are crammed with long strings of letters, numbers, place names and ethnic-group names. Some users explain "the paternal ancestry of Chinese surnames"; others search eagerly for lost relatives, inviting "anyone whose ID sequence starts with such-and-such" into a WeChat group; still others post screenshots of an unusually "pure" or "impure" ancestry breakdown and draw a chorus of amazed replies.

To take ancestor-hunting further, WeGene also has a feature that finds a user's "genetic relations." Once a blood relative also uses WeGene, that person's name appears in the user's list. WeGene sorts family relationships into nine degrees. The first, the closest, covers parent and child; the second covers siblings and grandparent-grandchild; the third covers great-grandchildren, nieces and nephews, aunts and uncles; and so on down to the ninth, the most distant.

Source: provided by interviewee Bai Haiying

Not long after her test, Bai Haiying went home to her hometown and ran into her distant cousin Zheng Wei, and heard that he had taken a WeGene test too, though his report hadn't come through. A few days later, she was startled to find Zheng Wei's name sitting in her genetic relations list.

Zheng Wei is a little younger than Bai Haiying; her paternal grandfather and his maternal grandfather are brothers, and when the two meet they call each other older sister and younger brother. WeGene matched them as ninth-degree relations — the most distant blood tie within its range. Bai Haiying lives in Shanghai and Zheng Wei lives in Ruian, Zhejiang Province, but the gene test picked them out and linked them automatically, which struck both of them as remarkable.

There was more. Bai Haiying's list holds twelve other people she has never met, most of them at the ninth degree, four at the eighth and one at the seventh — meaning five of them are closer to her by blood than Zheng Wei is, and she doesn't know a single one of them. Neither do the older members of her family.

Zheng Wei's list holds four people, and Bai Haiying is the only one he knows. The other three have different surnames, and their names mean nothing to him or his family.

WeGene lets users switch the genetic-relations feature off entirely, so they neither match others nor get matched; it also lets users contact their matches online and pick up ties with distant relatives. Bai Haiying and Zheng Wei never turned it off, but neither has ever reached out to any of these "strange relatives," and neither has ever received a friend request from one. So they quietly keep their "genetic relation" with each other, and let the relatives they have never met sit undisturbed in WeGene's list.

Bai Haiying fell silent for a moment, and still couldn't say why she hadn't contacted them. There seemed to be no particular reason. It simply never occurred to her.

Finding lost relatives is one of the main selling points of sequencing products like 23andMe. There are similar stories closer to home: police in Gansu tested the Y-chromosome DNA of a suspect's family members and traced their way to the suspect himself.

"A 76-year-old woman found her birth family after a 40-year search," from 23andMe's website

In practice, though, gene testing has flaws in ancestry analysis that are as hard to ignore as those in disease-risk prediction — and especially so in China.

Chen Li, an avid enthusiast, bought products from all three of WeGene, 23Mofang and Shuimu Gene, and found that the three reports gave different ancestry results.

"Shuimu Gene says I have 0.12% ancestry from southwestern ethnic minorities, while the 23Mofang report says I have 1.03% Tibeto-Burman ancestry. WeGene lists some obscure ethnic groups the other two never mention, like the Naxi and the She, but my share there is neither 0.12% nor 1.03%."

Jing Chao, 23Mofang's brand manager, explained that every test report is produced in two parts, testing and interpretation. "In the testing stage we can guarantee more than 99% accuracy. But that lab report is complex, lengthy raw data. Users can download it from our site, but it's very hard to read. Which means it has to go into the second stage — interpretation."

In interpretation, researchers at each lab pick out representative information and compare it against big-data references, "translating" it into a short result. That is also where errors tend to appear.

For ancestry specifically, every lab infers a user's ethnic ancestry from the frequency of population polymorphism sites (SNPs). Races and ethnic groups differ in DNA frequency in structured ways, and researchers compare a user's genome against the reference ancestry set they hold to calculate the best-matching ancestral makeup.

The matching depends on the ancestry database. The more complete a lab's database, the more precise the ancestry analysis a user gets.

But the fact is that for Chinese users, DNA records for the country's various ethnic groups are still very scarce. Western countries, by comparison, have more complicated ethnic mixes, more research on population migration and racial blending, and relatively more complete genetic databases. Even at top Western research institutions, research on genetic samples from East Asia is very thin.

Global figures on GWAS study sample sizes show that as of 2016, European samples made up 81% of the total, while Chinese samples were only 9%.

So Chinese users' ancestry often comes back as "more than 97% from the Chinese nation." That is not a meaningful number.

Every gene-testing company is now using the data it collects to do further analysis. WeGene, 23Mofang and Shuimu Gene all say their reports will be updated free on their platforms in the future, so existing users will enjoy more precise results along with later arrivals.

Bold consumers, and a privacy problem regulators don't much care about either

Bai Haiying, Zheng Wei and Wu Weiwei all used their real names when they registered. None of them knew WeGene allows anonymous testing.

It isn't that they trusted their privacy would be well protected. Nearly every consumer QDaily interviewed said they "don't really believe the platform will definitely protect my privacy," but since they thought the consequences were small, none of them worried much about genetic privacy.

"I think DNA data only becomes worth computing on once you've piled up a lot of it, and gene testing is still a fairly niche thing, so I figure it can't do much damage," Wu Weiwei said. She had a moment of worry at first, then decided that even if the platform leaked her data it "couldn't be traced back to me," so she went ahead with an easy mind.

Li Jiamin, who took a Gese test, said she was "not worried at all." "First, I'm relatively trusting of anything with a bit of a brand behind it that looks reasonably legitimate. Second, I don't think the information I handed over would hurt me personally even if it leaked."

According to official figures each company gave QDaily, 23Mofang and WeGene have each accumulated around 300,000 samples, Shuimu Gene more than 150,000 and Gese more than 10,000.

All of them also say they let users completely destroy the data they hold on the platform, reports and saliva samples alike; that work with third-party research institutions happens only with the user's authorization; that research data given to third parties covers only statistics, not individuals; and that registration doesn't require sensitive information like a real name or ID number.

But according to Chen Gang, very few users have ever asked WeGene to delete their information outright, and most of that small group are overseas users.

Genetic information can bite directly. If an insurer learns that a client has a high risk of a serious disease, it may refuse to underwrite them or demand a higher premium (even before genetic information came along, insurers were already contemplating using artificial intelligence to predict the odds of cancer and refuse cover on that basis). If an employer learns that an applicant carries a high-risk hereditary condition, it may discriminate in hiring…

In 2013, Anab Jain, founder of the design studio Superflux, staged a lawsuit. Its protagonist, Mann, ran into trouble when a government DNA saliva test of citizens produced a result that pushed his insurance payments to an unbearable level; he had no choice but to find a black-market clinic and take an underground gene implant to bring the payments down. Dynamic Genetics, which holds the license for that gene therapy, gathered evidence and sued him.

An invented lawsuit was enough to stir up real human fear. "When a new technology comes out, people often say, 'This is so exciting, we can do this and that with it.' But technology isn't isolated. It reacts with other things," she told QDaily at a TED conference last year.

Insurers have always adjusted premiums according to data, and much of the time the adjustments are reasonable: charging more to customers who smoke or who collect too many traffic violations encourages safer behavior.

But genes are innate. Adjusting someone's health coverage, or deciding whether to hire them, on the basis of an inborn trait fits any definition of discrimination.

In 2008 the United States passed the Genetic Information Nondiscrimination Act (GINA), which bars health insurers from using gene tests to refuse cover to high-risk people. But it says nothing about life insurance, long-term care insurance or disability insurance, and in those categories customers have been refused cover for carrying a high-risk gene.

China still has no relevant privacy law. In 2014 the China Food and Drug Administration and the National Health and Family Planning Commission jointly issued a ban forbidding any medical institution from carrying out clinical applications of gene sequencing. That one-size-fits-all approach drew considerable controversy, and in the first half of 2015 the health commission published lists of pilot programs for clinical gene-sequencing applications. That policy governs clinical treatment; it doesn't cover consumer services that give no direct medical advice.

In 2015 China issued the Guidelines on Administrative Licensing for the Collection, Gathering, Trading, Export and Exit of Human Genetic Resources, but there is still no clear official document, nor any industry-association document, setting rules for privacy protection in gene testing — still less a law that punishes the leaking of genetic information.

It has been just 15 years since the Human Genome Project succeeded. Gene sequencing seems to be moving so fast that lawmakers, administrators, companies and consumers alike have had no time to spare for the details of protecting information.

Computing life has become a service anyone can get with ease. The new questions that ability raises are still far from answered.

Cover image/Visualhunt, VCG

Translated from the original QDaily article. Original publication date retained.