The U.S. 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 more advanced toward that goal despite reports
of human rights violations.
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 enable governments, police,
hackers, corporations, forgers and others to abuse the information.
Sequencing or identifying details of DNA could also be used to create
bioweapons to kill ethnic groups or individuals.
"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 D. 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."
The world's largest genetic research center is in Shenzhen city, about
20 miles from Hong Kong.
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.
"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 Florida state Republican party Senator
Marco Rubio, Chairman of the Congressional-Executive Commission on
China.
Mr. Rubio's February 8 statement was in his letter to Waltham,
Massachusetts-based Thermo Fisher Scientific's CEO Marc N. Casper who
is vice chair of the U.S.-China Business Council.
Mr. Casper's DNA sequencers are reportedly operating in Xinjiang
"where grave human rights violations are being perpetrated by the
Chinese government" in its DNA collection, Mr. 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?" Mr. 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," New York-based Human Rights
Watch (HRW) said in a 3,500-word 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 $1 billion in 2016, but it was unclear the total amount of private
and government spending.
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 U.S.
Department of Health and Human Services.
The NHGRI's 2018 budget request is about $400 million, a decrease of
$118 from 2017, the institute said.
It invested more than $155 million for 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 $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."
Mr. 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 U.S. is not, Mr. 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."
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.
"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.
"Eventually we will get to a point where we will want to -- if it is
not complete genome sequencing, we will want to get a lot more genomic
information than we currently get from our small screening efforts.
"There's a newborn screening program in the United States and most
developed countries in the world for a handful of genetic diseases,"
he said.
Mr. Green has not had his own DNA sequenced.
"No, not yet. But fortunately I'm very healthy. I would tell you that
if I or a member of my family would get cancer tomorrow, I would use
the tools of genomics immediately to try and read out the DNA of the
tumor."
***
Richard S. Ehrlich is a Bangkok-based journalist from San Francisco,
California, reporting news from Asia since 1978 and winner of Columbia
University's Foreign Correspondent's Award. He is a co-author of three
non-fiction books about Thailand, including "'Hello My Big Big Honey!'
Love Letters to Bangkok Bar Girls and Their Revealing Interviews," "60
Stories of Royal Lineage," and "Chronicle of Thailand: Headline News
Since 1946." Mr. Ehrlich also contributed to the chapter "Ceremonies
and Regalia" in a book published in English and Thai titled, "King
Bhumibol Adulyadej, A Life's Work: Thailand's Monarchy in
Perspective." Mr. Ehrlich's newest book, "Sheila Carfenders, Doctor
Mask & President Akimbo" describes a female mental patient who is
abducted to Asia by her San Francisco psychiatrist.
His online sites are: