Code and Capital: Genetic Testing in China
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2017-03-27 04:07:44

Ran Yingying, a former state television presenter, is also the wife of Chinese Boxing Association flyweight champion Zou Shiming. Recently, Ran drew attention for posting the test scores of her 6-year-old son’s commercial genetic test, which had come up with a series of figures covering everything from his ability to learn languages to music appreciation, athletic ability, interpersonal skills, and aptitude for mathematics.

“It looks like the son of China’s most successful boxer did not get his father’s sports genes,” Ran wrote, mostly in jest. Her post was forwarded tens of thousands of times, with many commenters saying they want to perform similar tests on themselves or their kids.

Such genetic tests have become so popular that in late 2015, 22 experts in the fields of genomics and sports science published a statement in the British Journal of Sports Medicine saying that no child or young athlete should be subjected to genetic testing to spot athletic talent or boost performance. They concluded that the scientific evidence on the effectiveness of these commercial tests is “simply far too weak to back their use.”

Public demand is running high regardless. With varying levels of scientific support, startups are already offering a wide array of genetic tests, be they screenings for health risks or predictors of personality.

I did genetic tests with a very famous genomics company, and they gave me a 14-megabyte document full of genetic code which I could not decipher by myself.

The test taken by Ran’s child cost 6,500 yuan ($940) and was developed by DaAn Gene, a Guangzhou-based genomics company that only began offering personal genetic testing products in 2015. Affiliated with Sun Yat-sen University, DaAn had been focusing on research-related gene studies and working with institutions. It was only in the past two years that it started targeting members of the public as customers.

In China, there are over 150 genomics firms. Currently, 70 percent of them mainly offer gene-testing services, and an increasing number of them have started to offer tests to individual consumers. With attractive advertisements and mysteriously advanced technology, genomics firms have become attractive choices for investors. A rough calculation by CN Healthcare says that 40 Chinese gene companies received investment in 2016, worth over 80 billion yuan in total.

According to the National Human Genome Research Institute in the U.S., genome sequencing costs started to fall sharply in 2007, when the cost per genome was around $10 million. By 2015, that number had dropped to less than $1,000.

As these businesses increasingly target the public, two types of gene companies have emerged: On one side, there are the traditional gene technology companies that entered the market before 2012; on the other side are the startups targeting individual customers and promoting the commercial use of genomics.

A laboratory technician transfers a sample for a genetic test in Xi’an, Shaanxi province, Dec. 1, 2016. Wei Yongxian/VCG

A laboratory technician transfers a sample for a genetic test in Xi’an, Shaanxi province, Dec. 1, 2016. Wei Yongxian/VCG

The young startups frame the debate as established gene companies turning their backs on ordinary consumers, while the traditional companies claim that many of these consumer-focused businesses are distorting genetic science. Li Ruiqiang, CEO of Beijing-based Novogene, says his company would never offer talent tests, as they only choose to do things “that are scientifically reliable.”

But at the same time, there are also companies like DaAn Gene that cover both professional and personal tests. “As a leading company in the genomics industry, it’s our responsibility to help more people learn about gene studies, with lower prices and from a simpler angle,” a spokesperson at DaAn Gene told Chinese business newspaper 21st Century in 2015.

A Changing Industry

China has strict rules for public hospitals hoping to distribute gene products developed by private companies: An official approval from the China Food and Drug Administration is needed, but in a general sense, the official attitude appears to favor the wider use of gene technology in medical fields. In 2015, the Chinese health ministry for the first time allowed 107 hospitals to conduct non-invasive prenatal tests (NIPTs). One year later, the ban was lifted, and all hospitals with an obstetrics department could do the test.

Worldwide, DNA-based tests are available for over 1,500 diseases in people of all ages, yet so far in China, the NIPT, which costs about 2,000 yuan per test, is the most common and screens for three kinds of genetic disease.

Although the government has allowed nearly all hospitals to conduct NIPTs, these tests which involve widely accepted science, still aren’t a direction many startup companies plan to specialize in. This is largely because two companies, Berry Genomics and BGI, basically dominate the NIPT service market, leaving slim opportunities for newcomers.

If a parent forces their child whose genes showed athletic ability to play sports even though the child prefers piano, there are obvious ethical problems.

Zheng Hongkun founded Biomarker Technologies in 2009 after working at BGI for nine years. With an estimated market value of 1 billion yuan, his company develops sequencing technologies and provides data and sequencing services for research institutes. Zheng says Biomarker will put more effort into developing genetic applications for early tumor detection and more precise medical treatment. “Apart from reproductive health, tumors are the other area in which genomics can play an important role,” he adds.

Gene data mining and analysis remain challenging areas, but they also have the biggest potential, says Zheng. “In order to apply this to disease detection and medical treatment, we need more data to study and experiment on.”

After doing two genetic tests, Huang Jinzhang, the former editor-in-chief of Phoenix Weekly, decided to start his own genomics company, Gese DNA, which focuses on providing “readable content.” The aim is to present information in a straightforward way, without technical jargon or figures.

“I did genetic tests twice in 2013 with a very famous, very professional genomics company, and they gave me a report: a 14-megabyte document full of genetic code which I could not decipher by myself,” Huang told China Newsweek magazine in December 2016. Afterward, he decided to develop a more user-friendly alternative.

The package offered by Gese DNA, which costs 499 yuan, claims to answer questions relating to six aspects of health and character — for example, how fast you can learn new things, whether you’re easily addicted to something, or if you have an introverted personality. If you’re a man, it can even tell you the probability that you’ll go bald.

Brand X Pictures/VCG

Brand X Pictures/VCG

Compared to medical uses like NIPT and tumor treatment, personal genetic tests, which purport to answer people’s questions about their health, lifestyle, and personality, tend to be more explicit, have less scientific backing, and be less regulated.

On Taobao, China’s largest online e-commerce platform, there are clear rules banning the sale of these genetic products, although gene-testing packages, ranging in price from 99 to 2,999 yuan, can still be found at over 40 stores. Most of these target parents who want to find out more about their children’s talents.

Though recognized by many people and favored by startups and venture capitalists, genetic tests remain controversial. “If a parent forces their child whose genes showed athletic ability to play sports even though the child prefers piano, or if an employer wants to see the test results, there are obvious ethical problems,” says Huang Shangzhi, a professor at Peking Union Medical College Hospital in Beijing.

A controversial business model

But ethical issues and accuracy are not primary concerns for many businesspeople. WeGene, another personal genetics company, not only generates talent reports, but also gives health resolution packages that include advice on losing weight or curing insomnia.

Once you part with your genetic information, there can’t be guarantees of privacy and anonymity.

Selling health solutions to consumers is a common business model applied by companies, but there is also another approach: data collection.

California-based 23andMe has become a role model for many Chinese genomics companies. Initially a personal genetics startup, 23andMe has now become a research company that partners with drug developers and medical institutions. In 2015, it announced a deal with Pfizer, giving the giant drugmaker access to data it collected from 650,000 individuals.

Marcy Darnovsky, executive director of the Center for Genetics and Society, wrote in an article criticizing 23andMe: “Once you part with your genetic information, there can’t be guarantees of privacy and anonymity.”

Will 23andMe’s Chinese acolytes follow a similar path to monetization by selling data? Cheng says that companies like Gese DNA and WeGene can certainly accumulate a lot of data, which is a core component for genetic research.

Personal genetic testing startups can see a path to becoming data-oriented research companies, provided they can get enough private data and permission to use it. Alternatively, they can try to develop their medical teams, becoming more service-oriented by partnering with hospitals and medical institutions to offer health solutions.

The qualifications to decode genes could be a determining factor for startups, Professor Huang says. For talent tests, accuracy might not be vital, but medical treatment is different — and Huang says China lacks trained genetic consultants. “The genetic test results are useful tools for clinical diagnosis and treatment, but only people with both genetic knowledge and clinical experience can make sense of the data,” he says, adding that only an estimated 5 percent of doctors in China are qualified to do this.

Speculating about the future of the genomics industry, Huang says that genetic tests alone cannot constitute an industry. “While ensuring data security, companies will have to work together to share and integrate data resources to develop either health consultancies for ordinary people or disease treatment for the medical industry,” he says. “In either case, these gene companies cannot work alone — they have to work with hospitals, drugmakers, or other research institutes.”

This is an original article by CKGSB Knowledge and has been used with their permission. The article was first published here on Feb. 8, 2017.

(Header image: A laboratory technician holds a centrifuged blood sample to be used in a genetic test in Xi’an, Shaanxi province, Dec. 1, 2016. Wei Yongxian/VCG)