The US government’s National Human Genome Research Institute (NHGRI) is studying if every American baby should undergo extensive DNA sequencing and analysis at birth, while China and other countries are already more advanced toward that goal despite rights concerns.
DNA, the double helix of deoxyribonucleic acid, can reveal a person’s physical and psychiatric health, identity, relatives and other details. But databases of people’s DNA could also enable governments, police, hackers, corporations, forgers and others to abuse the information.
“I do know that if you look in the last 15 years, the investment in genomics, in particular, have been more substantial in countries like China, South Korea, Singapore, and even places like Brazil,” NHGRI director Eric Green said in an interview.
“Support for biomedical research in the United States has not really kept up with inflation, and other countries have taken our playbook and run with it more aggressively – by ‘playbook’ I mean genomic tools and technologies… We’re hoping to see similar increases in the future.”
Sequencing reveals the order of the four chemical “bases” which create a DNA molecule. That information can display what lines of DNA turn genes on or off, and show mutations which may result in disease – plus other information.
The world’s largest genetic research center is in Shenzhen. China’s databases hold an estimated 40 million people’s DNA samples. They include DNA from ethnic Uighurs in rebellious Xinjiang province, where 10 million Uighurs and other predominantly Muslim minorities live.
Sequencing or identifying details of DNA, rights groups say, could be used to create bioweapons to kill specific ethnic groups or individuals.
“The Chinese government’s mandatory data-banking of the entire [Xinjiang] population’s biodata, including DNA, has understandably raised alarm bells among rights advocates, given that China lacks the kinds of legal safeguards that other countries implement to manage their DNA databases,” said US Senator Marco Rubio, chairman of the Congressional-Executive Commission on China.
Rubio’s February 8 statement was in his letter to Waltham, Massachusetts-based Thermo Fisher Scientific’s CEO Marc Casper who is vice chair of the US-China Business Council.
Casper’s DNA sequencers are reportedly in operation in Xinjiang “where grave human rights violations are being perpetrated by the Chinese government” in its DNA collection, Senator Rubio wrote.
“Can you provide details of your relationship with the Xinjiang Public Security Bureau and the Chinese Ministry of Public Security, and relevant discussions you may have had regarding the intended use of Thermo Fisher Scientific’s equipment?” Rubio asked.
“Chinese authorities in Xinjiang are collecting DNA samples, fingerprints, iris scans, and blood types of all residents in the region between the age of 12 and 65,” US-based Human Rights Watch (HRW) said in a report in December.
“Thermo Fisher Scientific has supplied the Xinjiang police with some of these DNA sequencers,” HRW said.
HRW asked Thermo Fisher Scientific for an explanation in 2017 and received a reply which stated: “Given the global nature of our operations, it is not possible for us to monitor the use or application of all products we manufactured.”
Beijing says DNA data improves health services and saves lives from undiagnosed diseases. The “blood cards for DNA collection” are linked to each individual’s identity number, according to the Chinese government’s Office of Population Service and Management and Real Name Registration Work Leadership Committee.
One unconfirmed report said China’s commercial DNA sequencing market was worth US$1 billion in 2016, but the exact amounts of private and government spending were unclear.
China finalized plans for a “multi-billion dollar project” which during the next 15 years will “sequence the genomes of many millions of citizens,” Wired magazine reported.
China’s DNA projects dwarf the Bethesda, Maryland-based NHGRI, which is under the National Institutes of Health and headed by the US Department of Health and Human Services.
The NHGRI’s 2018 budget request is about US$400 million, a decrease of US$118 from 2017, the institute said. It invested more than US$155 million in DNA sequencing technology during the past 12 years.
Separately, corporations involved in DNA collection, analysis or other services include Illumina, Roche, GSK, AstraZeneca, Veritas Genetics, 23andMe, Seven Bridges and others.
NHGRI director Green’s institute is famous for its Human Genome Project which, for the first time, “read out all of human DNA’s letters and determined their precise order,” he said. That project successfully ended 15 years ago. Now the institute uses individual patients’ genomic information for medical diagnoses and treatment.
“We’re seeing exciting developments on how to actually take patients with rare diseases – that you have no idea what is wrong with them – and be able to, for something like US$1,000, be able to read out all their DNA and be able to figure out what is wrong with that patient and in some cases identifying ways to treat them.”
Green was in Bangkok to receive Thailand’s international Prince Mahidol Award on January 31 for his expertise on human genomics.
Asked what China was doing in genomics that the US is not, Green replied: “They have built some very large programs in genome sequencing. We have genome sequencing abilities. They have simply scaled more aggressively than we have.
“I do know that they [China] are talking more about the notion of sequencing every child at birth. I don’t know if they are doing that yet.
“My institute actually has a series of grants to try to study that, you know, whether that is a desirable thing or not. I think it’s still a little too early,” he said. “I’m not afraid of it by any means. There are some who perhaps are. I absolutely believe people should have a choice.”