NEW
YORK: They're called discreet DNA samples, and the Elk Grove,
California, genetic-testing company easyDNA says it can handle many
kinds, from toothpicks to tampons.
Blood stains from bandages
and tampons? Ship them in a paper envelope for paternity, ancestry or
health testing. EasyDNA also welcomes cigarette butts (two to four),
dental floss ("do not touch the floss with your fingers"), razor
clippings, gum, toothpicks, licked stamps and used tissues if the more
standard cheek swab or tube of saliva isn't obtainable.
If the
availability of such services seems like an invitation to mischief or
worse - imagine a discarded tissue from a prospective employee being
tested to determine whether she's at risk for an expensive disease, for
instance - the Presidential Commission for the Study of Bioethical
Issues agrees.
On Thursday it released a report on privacy
concerns triggered by the advent of whole genome sequencing, determining
someone's complete DNA make-up. Although sequencing "holds enormous
promise for human health and medicine," commission chairwoman Amy
Gutmann told reporters on Wednesday, there is a "potential for misuse of
this very personal data."
"In many states someone can pick up
your discarded coffee cup and send it for (DNA) testing," said Gutmann,
who is the president of the University of Pennsylvania.
"It's not a
fantasy to think about how, without baseline privacy protection, people
could use this in a way that would be really detrimental," such as by
denying someone with a gene that raises their risk of Alzheimer's
disease long-term care insurance, or to jack up life insurance premiums
for someone with an elevated genetic risk of a deadly cancer that
strikes people in middle age.
"Those who are willing to share some
of the most intimate information about themselves for the sake of
medical progress should be assured appropriate confidentiality, for
example, about any discovered genetic variations that link to increased
likelihood of certain diseases, such as Alzheimer's, diabetes, heart
disease and schizophrenia," Gutmann said.
The commission took on
the issue because whole genome sequencing is poised to become part of
mainstream medical care, especially by personalizing medical treatments
based on a patient's DNA.
$1,000 GENOME
That has been driven
in large part by dramatic cost reductions, from $2.5 billion per genome
in the Human Genome Project of the 1990s and early 2000s to $1,000
soon. Several companies, including Illumina Inc. and Life Technology's
Ion Torrent division, sell machines that can sequence a genome for a few
hundred dollars, but that does not include the analysis to figure out
what the string of 3 billion DNA "letters" means.
A three-year-old
federal law prohibits discrimination in employment or health insurance
based on someone's genetic information but does not address other
potential misuses of the data. Without such privacy protection, said
Gutmann, people may be reluctant to participate in genetic studies that
do whole genome sequencing, for fear their genetic data will not be
secure and could be used against them.
Recommendations from such panels are not binding but have been used as the basis for policy and legislation.
One
scenario the panel offers is a "contentious spouse" secretly having a
DNA sample sequenced and using it in a custody battle "as evidence of
unfitness to parent," perhaps because the DNA showed a genetic risk for
mental illness or alcoholism. There are no federal laws against that.
Or,
the panel said, DNA information might be posted in a social networking
site "by a malicious stranger or acquaintance," possibly hurting
someone's "chance of finding a spouse, achieving standing in a
community, or pursuing a desired career path."
The bioethics panel
recommends a dozen forms of privacy protection, including that
"surreptitious commercial testing" be banned: No gene sequencing or
other genetic testing should be permitted without consent from the
person the DNA came from, it said. About 25 states currently allow such
DNA testing.
Critics of the lack of genetic privacy thought greater urgency was needed.
"The
report lays out a lot of important best practices and does endorse
further state and federal regulations, but it doesn't offer a timeline,"
said Jeremy Gruber, president of the Council for Responsible Genetics, a
private group that monitors genetic issues. "What will inevitably
happen is whole genome sequencing will enter greater use and we won't
have proper regulations to insure privacy."
A bill introduced in
California, home to many DNA testing companies, by state Senator Alex
Padilla would ban surreptitious testing, requiring written authorization
from the person the genetic sample was taken from.
It is not
clear how many labs are willing to analyze DNA without that
authorization. In practice, well-known genetic testing companies such as
privately held 23andMe test only saliva samples that are too large to
acquire surreptitiously, such as from a drinking glass or licked stamp.
"A person would really know that they are spitting into a tube," said
23andMe spokeswoman Jane Rubinstein.
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