China’s Push for Better Babies

Getting time with Qiao Jie is not easy. At 7:30 a.m., the line coming out of the fertility centre that she runs blocks the doorway and extends some 80 metres down the street.

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When she finally emerges, she jumps to the topic at hand: spreading awareness of preimplantation genetic diagnosis (PGD), a procedure that helps couples undergoing in vitro fertilization (IVF) to avoid passing on genetic mutations that could cause disease or disability in their children.

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Early experiments are beginning to show how genome-editing technologies such as CRISPR might one day fix disease-causing mutations before embryos are implanted. But refining the techniques and getting regulatory approval will take years. PGD has already helped thousands of couples. And whereas the expansion of PGD around the world has generally been slow, in China, it is starting to explode.

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Although Chinese fertility doctors were late to the game in adopting the procedure, they have been pursuing a more aggressive, comprehensive and systematic path towards its use there than anywhere else.

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And well-equipped and powerful clinical research groups, including Qiao’s, are stepping up efforts to improve the technology, increase awareness and bring down costs.

Comprehensive figures are difficult to come by, but estimates from leading PGD providers show that China’s use of the technique already outpaces that in the United States, and it is growing up to five times faster

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Such systematic efforts raise thorny questions for bioethicists. Some worry that pushes to eliminate disabilities devalue the lives of those who already have them. The cost and accessibility of the procedure raises concerns about genetic traits further widening the divide between rich and poor people. Then there are concerns about the push to select for non-disease-related traits, such as intelligence or athletic ability. The ever- present spectre of eugenics lurks in the shadows. But in China, although these concerns are considered, most thoughts are focused on the benefits of the procedures.

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Generally, the process involves removing one or a few cells from an embryo created during IVF and then using various techniques to test the structure and number of chromosomes and even the sequence of individual genes. Physicians typically discard embryos that don’t pass the tests.

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And the centres with licences to do PGD have created a buzz in their race to claim firsts with the technology. In 2015, CITIC-Xiangya boasted China’s first “cancer-free baby”. The boy’s parents had terminated a prior pregnancy after genetic testing showed the presence of retinoblastoma, a cancer that forms in the eyes during early development and often leads to blindness. In their next try, the couple used PGD to ensure that the gene variant that causes retinoblastoma wasn’t present. Other groups have helped couples to avoid passing on a slew of conditions: short-rib-polydactyly syndrome, Brittle-bone disease, Huntington’s disease, polycystic kidney disease and deafness, among others.

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China might have got a slow start, but it is now overtaking Western nations in its use of PGD.

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Joe Leigh Simpson, a medical geneticist at Florida International University in Miami, and former president of the Preimplantation Genetic Diagnosis International Soci- ety, is impressed by the quality and size of the Chinese fertility clinics. They “are superb and have gigantic units. They came out of nowhere in just 2 or 3 years,” he says.

Chinese researchers are also looking for more disease-associated gene variants, specifically to expand the impact of PGD. The most concentrated efforts are being orchestrated by He Lin, a geneticist at Shanghai Jiao Tong University. He has set out an ambitious project: to pin down all the mutations in all the genes that cause diseases and put them into a single database. “We just do them one by one until we get the whole set,” he says, referring to the roughly 6,000 known genetic diseases. As disease–gene links are verified, they could be added to the list of things that PGD can screen for.

The first target, He says, is deafness. Wang Qiuju, a hearing-loss specialist at the Chinese PLA General Hospital in Beijing and head of the project, says that she plans to get up to 200,000 samples from 150 hospitals throughout China to identify associated mutations.

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Such efforts, for hearing loss in particular, can seem jarring because many people in the West do not consider it a problem to be avoided. In the United States, some deaf couples have used PGD to select for congenital deafness, in an effort to preserve Deaf culture. Such sentiments wouldn’t make sense to many parents in China.

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People in China seem more likely to feel an obligation to bear the healthiest child possible than to protect an embryo.

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Although such testing has become routine in the United Kingdom and United States, many in the West won’t terminate a pregnancy just because of Down’s syndrome.

Jiani Chen, a genetic counsellor at the University of Oklahoma Health Sciences Center in Oklahoma City, says that this isn’t the case in China. “In China, if you want to abort a baby with Down’s syndrome, no one will scold you.”

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In the West, PGD still raises fears about the creation of an elite genetic class, and critics talk of a slippery slope towards eugenics, a word that elicits thoughts of Nazi Germany and racial cleansing. In China, however, PGD lacks such baggage. The Chinese word for eugenics, yousheng, is used explicitly as a positive in almost all conversations about PGD. Yousheng is about giving birth to children of better quality. Not smoking during pregnancy is also part of yousheng.

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To many fertility specialists, what’s most striking about China’s adoption of PGD is the speed and organization of its uptake. China already seems to provide more procedures than the United States, and with growth estimated at 60–70% per year, is on target to catch up in per capita terms in the next few years.

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There are also social and economic concerns. Some parents of affected children argue that reducing the number of children with those diseases would reduce government funding for research into treatments. Others object to the idea that they are being discouraged from conceiving children the usual way.

The debate has made physicians and scientists wary. “The scientific community is not interested in getting too forward out in front of public opinion,” says Simpson, even though he thinks that the evidence is on the side of employing more PGD. “With every reproductive biology advance,” he says,“ we get the same questions: ‘won’t there be a slippery slope that leads to abuse?’ But it never happens.”

The upshot is that there has never really been advocacy organized around PGD in the United States, says Bonhomme. And without government support, it remains for many a prohibitively expensive procedure. Insurance coverage is “pitiful”, says Svetlana Rechitsky, director of the genetic-testing firm Reproductive Genetic Innovations in Northbrook, Illinois. Sitting at her desk, sorting through letters from insurers — mostly refusals to offer coverage for PGD — she says, “It’s getting worse and worse.”

Already the procedure is much cheaper in China — about one-third of what it costs in the United States. Cheaper tests will make it more palatable for national insurance coverage, some- thing Qiao has already started pushing for. “Before I retire, I want to get the government involved. I have 12 years,” she says.