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                 Copyright 2002 U.S. News & World Report
                          U.S. News & World Report

                              December 2, 2002

SECTION: SCIENCE & TECHNOLOGY; INVESTIGATIVE REPORT; Vol. 133 , No. 21; Pg.
58

LENGTH: 1738 words

HEADLINE: Keeping secrets

BYLINE: By Dana Hawkins

HIGHLIGHT:
As DNA banks quietly multiply, who is guarding the safe?

BODY:
Ever leave your coffee cup behind, lick an envelope, squash a cigarette into
an ashtray, or toss out a wad of gum? If so, a sample of your DNA could be
nestled right now in a plastic tube on a shelf at a company like Genelex in
Redmond, Wash. Every day, we leave a tantalizing trail of cells that dozens
of labs like Genelex collect and analyze. The lab has amassed 50,000 DNA
samples, many gathered surreptitiously for paternity testing. "You'd be
amazed," says CEO Howard Coleman. "Siblings have sent in mom's discarded
Kleenex and wax from her hearing aid to resolve the family rumors."

DNA collections like those at Genelex are evidence of a quiet but disturbing
new trend: the growth of "biorepositories." Poorly regulated, they are the
obscure cousins of the strictly controlled national bank of 1.2 million
blood and saliva samples from convicted felons and the military's set of 3.8
million molecular dog tags. Biorepositories include haphazard collections of
DNA warehoused by companies, researchers, local law enforcement, and
detective agencies. No one knows just how many samples are sitting around in
freezers and shoeboxes. But if you include the millions of blood spots
pricked from the heels of newborns for genetic testing, hospital tissue
archives, and banked blood donations, the total rises to the hundreds of
millions. These banks, and the computer databases derived from them, can be
powerful tools for identifying remains, studying links between genes and
disease, catching criminals--or clearing the innocent. In recent years,
post-conviction DNA testing has exonerated 111 people in the United States.
At the same time, says Alec Jeffreys, the British geneticist who invented
the DNA fingerprinting technique used for identification, "DNA's power is
its strength and its Achilles heel." The DNA code from a stray cell or two
is as unique a personal document as any birth certificate--and infinitely
more revealing about personal characteristics, including disease risks. All
of which makes experts worry that biorepositories are proliferating without
enough attention to consent, confidentiality, and security. Says Jeffreys:
"I feel pride that it has spread so far so fast--and twinges of alarm that
it's starting to get out of hand."

DNA is regularly gathered or stored without donors' knowledge. Cells banked
for one purpose, such as medical diagnosis, have been shared with or sold to
other users for research or profit. And samples collected during criminal
investigations from victims' coworkers, neighbors, sexual partners--even
from victims themselves--sometimes remain in local police databases to be
searched in future crimes. "Protections are absolutely inadequate," says
Arthur Caplan, director of the University of Pennsylvania's Center for
Bioethics. One radical solution he and others are considering is a national
repository, containing everyone's genetic code, which would be closely
regulated by an independent body. "There may be a good case for it," says
Caplan. "I think it's coming, eventually."

Matchmaker. DNA's ability to help investigators finger bad guys is a marvel
to Paul Ferrara. "Look at this," the director of Virginia's division of
forensic science exults. He just got a hit: A search of his database yielded
a match to a sample from a criminal investigation. Grinning broadly, he
wheels his chair toward his computer to scan details of the latest catch.
"It's the fun part of the job," he says. Nearly every state has its own DNA
lab. Virginia's has collected more than 187,000 samples since 1989,
resulting in more than 1,000 matches between DNA from crime scenes and
profiles--the samples' unique molecular fingerprints--stored in its
database.

Ferrara expects even more action in January, when Virginia plans to take the
controversial step of becoming the first state to get DNA samples not only
from convicted felons but also from people newly arrested for violent
felonies. In keeping with state law, he says, the lab plans to destroy
samples from arrestees who aren't convicted.

But some police departments cross over into what Ferrara calls "the
naughtier areas"--collecting and searching the DNA of people who aren't even
named as suspects. In many states, labs sometimes collect "volunteer"
samples from people near the scene of a crime. Critics call the practice DNA
dragneting and point to several high-profile cases involving dark-skinned
men. In one, police asked 160 black men in Ann Arbor, Mich., to submit blood
samples in a failed attempt to identify a serial rapist. Law enforcement
officials refute accusations of racism and say that collecting volunteer
samples is actually a less invasive way of eliminating suspects than
traditional police methods, such as surveillance and questioning. "Besides,
it's their right to say no," says Howard Safir, former commissioner of the
New York Police Department.

Perhaps. But what of those who agree to provide DNA in an effort to aid
police? "After a case is solved," says Barry Steinhardt of the American
Civil Liberties Union, "the samples wind up in the usual suspects' database,
instead of being destroyed, as they should be." In Florida, Miami-Dade
County stores nearly 4,600 such volunteer samples. Neighboring Broward
County banks "elimination" samples taken from, for example, legitimate
partners of rape victims, to rule them out as suspects. For technical
reasons, says George Duncan, the DNA lab supervisor in Broward County, it's
difficult to exclude nonsuspects' samples from database queries. "We always
search against all profiles," he says. "You have to have quite a computer
system to get rid of them."

Profit motive. Even so, most forensic banks are more closely regulated than
those built by the small but growing number of for-profit companies. "It's
not the government that's going to violate privacy but the private sector.
They have a profit motive," says David Coffman, the supervisor of Florida's
DNA database. Some of these companies scour their own collections for
health-related genes. Others, like Ardais Corp., charge academic researchers
and drug companies a user fee for access to their collections. To gather
tissue samples, Ardais relies on medical centers to recruit surgery
patients. Other companies, like DNA Sciences, solicit samples online,
counting on the altruism of donors who want to help fight diseases. Genomics
Collaborative obtains samples through doctors, who are paid for their
efforts.

Still other firms hope to profit from DNA simply by storing it. They market
their service to parents and to families of firefighters and police, who
might one day need a sample to help identify their loved one. Funeral homes
and autopsy companies also bank DNA for family members who think they may
later need genetic data from the deceased. On a smaller scale, abandoned
cells--sometimes swiped on the sly--are accumulating in the back rooms of
private detective agencies. Gumshoes have gathered samples from
undergarments, fast-food containers, and sealed envelopes while
investigating spousal infidelity, product tampering, and death threats to
CEOs.

No matter what the original purpose of a private DNA collection, there's no
guarantee it won't be put to new uses. "Without legal assurances that
privacy policies are binding, what's to keep companies from auctioning off
samples to the highest bidder?" asks Mary Anderlik of the Institute for
Bioethics at the University of Louisville School of Medicine. When the
Belgian biobank Spitters.com went bankrupt, 500 saliva swabs donated for
research were (in the end, unsuccessfully) put up for sale alongside office
equipment. "Of course, we didn't want to sell the samples," says founder
Christophe Van Huffel. "But we had no choice. They were assets."

Even traditional registries established in the public interest have been
known to "leak" samples. Every state takes blood from newborns to screen
them for health problems that can be eliminated or minimized with early
treatment. But South Carolina sent 500 such samples to a private company for
research on a new genetic test and provided another 500 to the state law
enforcement division for baseline studies of DNA "markers." When these
transfers were publicized, the state changed the rules to allow parents to
request that their child's specimen be excluded from studies and destroyed
after two years. Yet several other states continue to maintain these genetic
records indefinitely, which experts say increases the chance of misuse.

Gene hackers. Then there's the risk of unintended leakage--to hackers. A new
survey of 35 DNA repositories of various types found that fewer than 40
percent of their computer systems are protected by security firewalls. Says
study author Nicole Palmour of McGill University in Montreal, "Once you
start looking at what's going on, you realize DNA databanking is a
terrifying adventure."

Some experts advocate sweeping change: a national repository storing genetic
material from everyone. Civil libertarians would probably oppose such a de
facto national ID system. The scheme would also collide with existing
programs--as the federal Centers for Disease Control and Prevention
discovered when it began discussing what might be the first step. It is
considering the feasibility of establishing a central bank for newborns,
which might one day house the cells of a generation. But states objected to
the idea. "They were worried that parents would opt out of newborn screening
altogether--a viable concern," says Harry Hannon of the CDC. He adds,
however, that the idea is not entirely off the table.

Proponents of a national databank argue that it would dramatically aid
genetic research and crime investigations. It could be managed by an
independent body rather than the government or law enforcement. Advocates
insist such a databank must come with guarantees that no one be denied
employment or insurance based on genetic makeup.

Storing everyone's DNA profile would quell charges of racism over whose DNA
is banked. It might also spur the passage of laws to bolster the security
and accuracy of the data and provide stringent public oversight. "It would
be far fairer and more effective than the current system," says Edward
Imwinkelried, a University of California-Davis law professor and an expert
on DNA evidence. "At least it's worth a debate."

GRAPHIC: Pictures: 1 At Virginia's state DNA lab, a sample card is painted
with blood from a convict. By comparing DNA data in its computers with crime
scene residues, the lab has helped solve more than 1,000 cases. (NICHOLAS
ROBERTS FOR USN&WR); Pictures: 2 The bloodstains left after the cards dry
contain a storehouse of DNA that technicians can analyze as needed.
(NICHOLAS ROBERTS FOR USN&WR); Pictures: 3 The lab's archive holds more than
187,000 sample cards collected since 1989. (NICHOLAS ROBERTS FOR USN&WR);
Pictures: SPOT TEST. Blood pricked from newborns for genetic diagnosis is
often archived. (BAJANDE--BSIP / PHOTORESEARCHERS)

LOAD-DATE: November 26, 2002