[Med-privacy] DNA databases
Peter Marshall
pwm@comcast.net
Thu, 8 Jun 2006 14:04:27 -0700
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June 7, 2006
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<bold><fontfamily><param>Times</param><x-tad-bigger> June 7, 2006
</x-tad-bigger></fontfamily></bold>
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Plan to Build Children's DNA
Database Raises Concerns
By ANTONIO REGALADO
June 7, 2006;=A0Page=A0B1
Why do some children become obese when they eat junk food, while others=20=
don't? Which kids are most susceptible to asthma?
Attempting to answer such questions, the Children's Hospital of=20
Philadelphia, the nation's oldest pediatric medical center, is=20
launching a major effort to collect and analyze detailed DNA profiles=20
on as many as 100,000 of its child patients, the first effort to=20
collect DNA on so many children.
CHOP plans to create a database which hospital researchers can use to=20
study children's genetic profiles, research that could guide the=20
development of diagnostic tests and drugs. The plan is one of the most=20=
ambitious yet to take advantage of new DNA-decoding methods that may=20
help scientists identify the genes that put people at risk for common=20
diseases. The 151-year-old hospital, known locally as "CHOP," says it=20
will spend around $40 million over the next three years collecting DNA=20=
profiles of children who visit the main hospital and its network of=20
clinics.
Similar DNA database efforts are cropping up across the U.S. and=20
overseas. This spring, the U.K. began collecting blood for a national=20
"biobank" expected to encompass 500,000 people. Kaiser Permanente, the=20=
big Oakland, Calif., health-maintenance organization, is developing=20
plans to request DNA samples from its two million adult members.
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=
</x-tad-smaller></smaller></fontfamily><bold><fontfamily><param>Times</par=
am><bigger><bigger><bigger><bigger><bigger>Plan
to Build Children's DNA
Database Raises Concerns
</bigger></bigger></bigger></bigger></bigger><smaller>By ANTONIO
REGALADO
<italic><color><param>6666,6666,6666</param><x-tad-smaller>June 7,
2006;=A0Page=A0B1</x-tad-smaller></color><x-tad-smaller>
=
</x-tad-smaller></italic></smaller></fontfamily></bold><fontfamily><param>=
Times</param>Why
do some children become obese when they eat junk food, while others
don't? Which kids are most susceptible to asthma?
Attempting to answer such questions, the Children's Hospital of
Philadelphia, the nation's oldest pediatric medical center, is
launching a major effort to collect and analyze detailed DNA profiles
on as many as 100,000 of its child patients, the first effort to
collect DNA on so many children.
CHOP plans to create a database which hospital researchers can use to
study children's genetic profiles, research that could guide the
development of diagnostic tests and drugs. The plan is one of the most
ambitious yet to take advantage of new DNA-decoding methods that may
help scientists identify the genes that put people at risk for common
diseases. The 151-year-old hospital, known locally as "CHOP," says it
will spend around $40 million over the next three years collecting DNA
profiles of children who visit the main hospital and its network of
clinics.
Similar DNA database efforts are cropping up across the U.S. and
overseas. This spring, the U.K. began collecting blood for a national
"biobank" expected to encompass 500,000 people. Kaiser Permanente, the
big Oakland, Calif., health-maintenance organization, is developing
plans to request DNA samples from its two million adult members.
</fontfamily>=
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If their parents consent, children receiving treatment or participating=20=
in new-drug clinical trials at CHOP or its clinics will provide a blood=20=
sample. Hospital scientists will then use a DNA scanner to create a=20
map, or profile, of the patient's genes. Each DNA profile will contain=20=
information on about 500,000 genetic markers; markers varying among=20
patients may be linked to disease.
The new research makes use of information generated by the Human Genome=20=
Project, which yielded a map of human DNA in 2000, and follow-on=20
studies. But the new efforts also raise difficult privacy and=20
medical-ethics questions. The issues are magnified in CHOP's project=20
because it involves DNA data from children.
CHOP says the DNA data will be kept in an anonymous database, reducing=20=
the risk that any individual's private information could be disclosed.=20=
But ethical questions remain. "When you hand over your DNA, you don't=20
know what information is in there," says Patricia Roche, a professor of=20=
health law at Boston University's School of Public Health. "Is it OK=20
for parents to give it away?"
Another question is how "informed" the parental consent will be: Once=20
the DNA is collected, patients won't be informed every time the data=20
are studied. Philip R. Johnson Jr., CHOP's chief scientific officer,=20
says parents will sign forms that say, "You can study my DNA and access=20=
my medical information." He says the wording is "very broad" to allow=20
different kinds of research.
Some worry that researchers could use a DNA database to carry out=20
searches that some patients would find objectionable, such as attempts=20=
to find factors particular to ethnic groups. Others worry that patients=20=
asked to participate in a research study would be less willing to=20
discuss health problems with their doctors.
In spite of privacy concerns -- and high costs -- some hospitals and=20
health organizations are rushing to collect their patients' DNA. By=20
linking genetic information to electronic medical records, hospitals=20
are well placed to obtain research funds and patents and to strike=20
partnerships with drug firms. "Over the last four or five years it's=20
been snowballing," says Boston University's Dr. Roche.
It isn't certain that DNA databases will pay off. Several private=20
efforts have folded in recent years. John Glaser, chief information=20
officer for Partners HealthCare, a Boston nonprofit health-care=20
provider, maintains a research database of medical records for 2.5=20
million patients. Partners says it has considered whether to collect=20
DNA from its patients, but "a lot of people are nervous and concerned=20
about how all this might be get misused," he says.
The CHOP project is one of dozens using DNA-chip technology to develop=20=
comprehensive genetic profiles. The chips, some no larger than a=20
postage stamp, are used to detect hundreds of thousands of DNA markers=20=
from a sample. Research centers have been pouring money into buying the=20=
new equipment, sold primarily by either Affymetrix Inc., of Santa=20
Clara, Calif., or Illumina Inc., of San Diego. CHOP will buy machines=20
and supplies from publicly traded Illumina.
Steven Altschuler, president and chief executive of the Children's=20
Hospital of Philadelphia, says the new DNA-chip technology has made it=20=
cheaper to get very detailed genetic information about patients. "We=20
are really talking about doing a very large number of patients very=20
fast," says Dr. Altschuler. CHOP and its 29 private clinics see one=20
million children a year.
With enough children in the database, researchers may learn which genes=20=
underlie problems affecting children most, from diabetes and obesity to=20=
asthma and cancer. "The ultimate goal is to discover predictive=20
diagnostic markers and later use them on every child in the future,"=20
says Hakon Hakonarson, director of the hospital's new Center for=20
Applied Genomics and formerly a senior executive post at DeCode=20
Genetics Inc., an Icelandic gene-hunting company.
Dr. Hakonarson says children make good research subjects because their=20=
health problems are more apt to be caused by genetics than by the=20
effects of aging. For instance, finding the genes that predispose=20
children to obesity could help guide the creation of weight-loss drugs.
The rush to build databases has some researchers worried about who will=20=
control new discoveries about genetic risk factors. CHOP says it will=20
seek to patent its discoveries. Other research groups say they won't,=20
because the information is so fundamental to medicine. "I would rather=20=
see this information in the public domain without patent restrictions,"=20=
says David Altshuler, head of medical and population genetics at the=20
Broad Institute, of Cambridge, Mass., which this year plans to scan=20
genes of about 10,000 people. Dr. Altshuler says there is a "sense of=20
urgency" to study important diseases before others make discoveries and=20=
file patents.
Write to Antonio Regalado at antonio.regalado@wsj.com1
=A0
URL for this article:
http://online.wsj.com/article/SB114965083201773495.html
=A0
Copyright 2006 Dow Jones & Company, Inc.=20=
--Apple-Mail-7--305223768
Content-Transfer-Encoding: quoted-printable
Content-Type: text/enriched;
charset=ISO-8859-1
<fontfamily><param>Times</param>
If their parents consent, children receiving treatment or
participating in new-drug clinical trials at CHOP or its clinics will
provide a blood sample. Hospital scientists will then use a DNA
scanner to create a map, or profile, of the patient's genes. Each DNA
profile will contain information on about 500,000 genetic markers;
markers varying among patients may be linked to disease.
The new research makes use of information generated by the Human
Genome Project, which yielded a map of human DNA in 2000, and
follow-on studies. But the new efforts also raise difficult privacy
and medical-ethics questions. The issues are magnified in CHOP's
project because it involves DNA data from children.
CHOP says the DNA data will be kept in an anonymous database, reducing
the risk that any individual's private information could be disclosed.
But ethical questions remain. "When you hand over your DNA, you don't
know what information is in there," says Patricia Roche, a professor
of health law at Boston University's School of Public Health. "Is it
OK for parents to give it away?"
Another question is how "informed" the parental consent will be: Once
the DNA is collected, patients won't be informed every time the data
are studied. Philip R. Johnson Jr., CHOP's chief scientific officer,
says parents will sign forms that say, "You can study my DNA and
access my medical information." He says the wording is "very broad" to
allow different kinds of research.
Some worry that researchers could use a DNA database to carry out
searches that some patients would find objectionable, such as attempts
to find factors particular to ethnic groups. Others worry that
patients asked to participate in a research study would be less
willing to discuss health problems with their doctors.
In spite of privacy concerns -- and high costs -- some hospitals and
health organizations are rushing to collect their patients' DNA. By
linking genetic information to electronic medical records, hospitals
are well placed to obtain research funds and patents and to strike
partnerships with drug firms. "Over the last four or five years it's
been snowballing," says Boston University's Dr. Roche.
It isn't certain that DNA databases will pay off. Several private
efforts have folded in recent years. John Glaser, chief information
officer for Partners HealthCare, a Boston nonprofit health-care
provider, maintains a research database of medical records for 2.5
million patients. Partners says it has considered whether to collect
DNA from its patients, but "a lot of people are nervous and concerned
about how all this might be get misused," he says.
The CHOP project is one of dozens using DNA-chip technology to develop
comprehensive genetic profiles. The chips, some no larger than a
postage stamp, are used to detect hundreds of thousands of DNA markers
from a sample. Research centers have been pouring money into buying
the new equipment, sold primarily by either <bold>Affymetrix</bold>
Inc., of Santa Clara, Calif., or <bold>Illumina</bold> Inc., of San
Diego. CHOP will buy machines and supplies from publicly traded
Illumina.
Steven Altschuler, president and chief executive of the Children's
Hospital of Philadelphia, says the new DNA-chip technology has made it
cheaper to get very detailed genetic information about patients. "We
are really talking about doing a very large number of patients very
fast," says Dr. Altschuler. CHOP and its 29 private clinics see one
million children a year.
With enough children in the database, researchers may learn which
genes underlie problems affecting children most, from diabetes and
obesity to asthma and cancer. "The ultimate goal is to discover
predictive diagnostic markers and later use them on every child in the
future," says Hakon Hakonarson, director of the hospital's new Center
for Applied Genomics and formerly a senior executive post at DeCode
Genetics Inc., an Icelandic gene-hunting company.
Dr. Hakonarson says children make good research subjects because their
health problems are more apt to be caused by genetics than by the
effects of aging. For instance, finding the genes that predispose
children to obesity could help guide the creation of weight-loss drugs.
The rush to build databases has some researchers worried about who
will control new discoveries about genetic risk factors. CHOP says it
will seek to patent its discoveries. Other research groups say they
won't, because the information is so fundamental to medicine. "I would
rather see this information in the public domain without patent
restrictions," says David Altshuler, head of medical and population
genetics at the Broad Institute, of Cambridge, Mass., which this year
plans to scan genes of about 10,000 people. Dr. Altshuler says there
is a "sense of urgency" to study important diseases before others make
discoveries and file patents.
<bold>Write to </bold>Antonio Regalado at
=
<color><param>0202,5353,B7B7</param>antonio.regalado@wsj.com</color><small=
er>1
</smaller></fontfamily><fontfamily><param>Helvetica</param>=A0
<bold><smaller><x-tad-smaller> URL for this article:
=
</x-tad-smaller></smaller></bold><color><param>0202,5353,B7B7</param><smal=
ler><x-tad-smaller>http://online.wsj.com/article/SB114965083201773495.html=
</x-tad-smaller></smaller></color><bold><smaller><x-tad-smaller>
=
</x-tad-smaller></smaller></bold></fontfamily><bold><fontfamily><param>Hel=
vetica</param>=A0<smaller><x-tad-smaller>
Copyright 2006 Dow Jones & Company, Inc. =
</x-tad-smaller></smaller></fontfamily></bold>=
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