U.S. to Develop DNA Study of One Million People
U.S. to Develop DNA Study of One Million People
An Obama initiative seeks to channel a torrent of gene
information into treatments for cancer, other diseases.
By Antonio Regalado on January 30, 2015
Medicine is being revolutionized by “population-scale”
genome projects.
President Barack Obama is proposing to spend $215 million
on a “precision medicine” initiative the centerpiece of which will be a
national study involving the health records and DNA of one million volunteers,
administration officials said yesterday.
Precision medicine refers to treatments tailored to a
person’s genetic profile, an idea already transforming how doctors fight cancer
and some rare diseases.
The Obama plan, including support for studies of cancer
and rare disease, is part of a shift away from “one-size-fits-all” medicine, Jo
Handelsman, associate director for the White House Office of Science and
Technology Policy, said in a briefing yesterday. She called precision medicine
“a game changer that holds the potential to revolutionize how we approach
health in this country and around the world.”
The White House said the largest part of the money, $130
million, would go to the National Institutes of Health in order to create a
population-scale study of how peoples’ genes, environment, and lifestyle affect
their health.
According to Francis Collins, director of the National
Institutes of Health, the study will recruit new volunteers as well as merging
data from several large studies already under way. Details still need to be
sorted out, said Collins, but the study could eventually involve completely
decoding the genomes of hundreds of thousands of people.
Officials indicated that patients might have more access
to data generated about them than is usually the case in research studies. That
is partly because scientists will need the ability to re-contact them, should
their genes prove interesting.
“We aren’t just talking about research but also about
patients’ access to their own data, so they can participate fully in decisions
about their health that affect them,” said John Holdren, director of the White
House Office of Science and Technology Policy.
The Obama initiative, which the president first announced
during his State of the Union address, also allocates $70 million for
DNA-driven research on cancer and another $10 million for the U.S. Food and
Drug Administration, which has struggled to regulate genome tests.
Collins said the U.S. is not seeking to create a single
bio-bank. Instead, the project would look to combine data from among what he
called more than 200 large American health studies that are ongoing and
together involve at least two million people. “Fortunately, we don’t have to
start from scratch,” he said. “The challenge of this initiative is to link
those together. It’s more a distributed approach than centralized.”
Collins warned that lack of “interoperability” in medical
record systems and gene databases could be the most significant obstacle to the
NIH’s plans.
A lack of standards is one reason why the U.S. lags some
European countries that already have large, well-organized studies linking
genomics to national health records. There is also competition from the private
sector, where precision medicine is a hot subject drawing large investments.
For instance, one of the world’s largest private
bio-banks, of 800,000 spit samples, is owned by 23andMe, a startup in Silicon
Valley that wants to become a kind of Facebook of gene research (see “23andMe’s
New Formula: Patient Consent = $”).
The entrepreneur J. Craig Venter, a onetime rival of the
NIH in sequencing the first human genome, announced plans a year ago to
sequence one million genomes by 2020 using private funding (see “Microbes and
Metabolites Fuel an Ambitious Aging Project”), and some drug companies have
large-scale sequencing plans as well (see “The Search for Exceptional
Genomes”).
In recent weeks, NIH officials met with administrators
from the Veterans Health Administration, whose ongoing “Million Veterans
Project” has already collected DNA samples from 343,000 former soldiers, and
partially analyzed the DNA of 200,000 participants.
“There is a lot of effort to avoid duplication since no
one has enough money, and I would expect these programs to work together,” said
Timothy O’Leary, chief research and development officer for the VA, which is
already spending $30 million a year on its study. However, he added that before
sharing data the VA would need guarantees that veterans’ private information
was not at risk.
If Obama’s budget is approved, the NIH will hand out the
money to academic centers. However, much of the cash will trickle down to tech
companies hired to store and organize the data, as well as to makers of
gene-sequencing instruments. Illumina of San Diego, which sells the most
popular sequencing machines, is likely to be the single largest financial
beneficiary of Obama’s plan in the short term.
David Goldstein, director of a new institute for genome
medicine at Columbia University, called the Obama plan part of an irreversible
drive toward obtaining more and more complete genetic information on people as
part of routine medicine. “The writing is on the wall,” Goldstein said. “We are
all going to be sequenced; the question is just who does it and what is done
with it. The challenge will be to do good things with the data.”
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