----- Original Message ----- From: dovewarrior@hughes.net
To: Undisclosed-Recipient:; Sent:
Tuesday, March 25, 2008 7:12 PM Subject: States Claiming
Ownership of Newborn's DNA
March 18, 2008
States Claiming Ownership of
Newborn's DNA
By Marti Oakley
Unknown to most new parents, or those who became parents in the
last
ten or so years, DNA of newborns has been harvested, tested,
stored
and experimented with by all 50 states. And all 50 states
are now
routinely providing these results to the Homeland Security
Department.
No doubt we can all see the benefits in testing for genetic
disorders
or genetic traits and tendencies that could be more adequately
dealt
with, in some cases actually deterring the onset of life-time
illness, but that seems not to be the real thrust of these
programs.
It may have been initially - but not now.
As with all good things, there are always those who seek the more
evil path, in essence turning what should have been a life saving
tool, a preventative measure into something insidious and
inhumane.
This is what has happened to this national effort.
Here in Minnesota the state tests for 56 various genetic
disorders
and variants. At least 1/3 of these tests produce a false
positive
meaning that a flaw was identified that actually did not exist.
Regardless, that false positive becomes part of the permanent
record
of the child and follows them for the rest of their lives as does
any
true positives. This means that the child will eventually
and most
likely face discrimination in employment and the ability to gain
health insurance at any cost.
There are other nagging problems with this system. Although
the
national website http://genes-r-us.uthscsa.edu/
insists that this
harvesting of DNA is a highly visible program, my own polling of
parents of newborns, or the grand parents had no idea that this
was
being done to their children and grand children. Further,
not one
knew that they had the right to demand the blood and tissue
samples
be destroyed after 45 days per written request. Even had
they known,
and the samples were destroyed (you would have no way of knowing
if
they really were) the information gleaned from them would still
be
available and on file ... in perpetuity.
Also unknown to at least the new parents in Minnesota, is that
once
that 45 days has lapsed, the state now claims that they
"own" the DNA
of that child. This claimed ownership now allows the state
health
agency to test, tamper, alter, sell, farm out, and utilize in any
way
they see fit, the DNA of your newborn. It can be
manipulated,
spliced with other DNA, and used in ways never intended under the
screening program.
Now, there are forms that have to be signed that agree to this
invasion of privacy, but the problem seems to be that this is not
done during pre-natal care, but rather, at the time of delivery
of
the infant. These forms are produced when the mother is
ready to
deliver and is being admitted to the hospital. That's when
these
"informed consent" forms are dragged out to be
signed. This is no
accident. Expectant parents simply sign what is put in
front of them
and are told they must sign to complete admission. Nice,
huh? And
none of them seems to be aware that what they are signing allows
this
right to have those additional blood and tissue samples
destroyed.
No matter, the damage is done and the results of those three
extra
blood drops are forever recorded and along with it, a lot of
genetic
information about the parents.
Although this is supposed to be an "opt-in" program,
rather than an
"opt-out", Minnesota has decided to interpret the law
differently.
Our legislators have decided that opting out is the way it should
be - regardless of the law. With that in mind they have
gone one
step further and declared that if the parent doesn't specifically
opt
out, they are presumed to have "informed consent" and
have opted in.
I have to give the special interests in Minnesota their dues.
Federal law and the courts have upheld the concept that human DNA
cannot be patented. But these fine folks, representing
insurance
companies, medical institutions, and big pharma have found a way
around that bothersome ruling. Using a compliant
legislature they
have made sure a system has been put in place that allows them to
indirectly access what should be the most private of all
information,
the most identifiable information concerning an individual and in
the
case of medical and pharmaceuticals, to use it in any way they
see
fit once the state claims ownership.
In January 2007, a lady named Twila Brase president of the
Citizens
Council on Healthcare, issued a written testimony to the
Minnesota
legislature on the unethical and hidden uses of harvested DNA by
the
state. The 18 page document can be located at:
http://www.oah.state.mn.us/cases/health4615/nbs-pc8.pdf
It is an eloquent treatise on the misuse of the DNA testing and
the
right of parents to be fully informed of what is really afoot in
these programs.
Currently, we have a monumental effort under way by Sue Jeffers
to
petition the state to;
Oppose illegal State government ownership of the blood, DNA and
genetic test results of newborn citizens in Minnesota.
http://www.cchconline.org/petition/babyDNA2007.php
In July 1997, solely by an executive decision of health
officials-no
law-the MN Department of Health began retaining the DNA-filled
blood
specimens of all newborn babies. The State now claims ownership
rights to the DNA of more than 670,000 children (approx.70,000
births/
yr).
In July 1986, MDH began cataloging the genetic test results of
all
Minnesota children. Approximately 1.4 million children are in the
database. Oppose the dissemination of newborn blood
and DNA to
genetic researchers
Oppose the Minnesota Department of Health's refusal to fully
inform
parents
Calls on Governor Tim Pawlenty to direct the Minnesota Department
of
Health (MDH) to comply with Minnesota state privacy law, to fully
inform parents of the genetic testing process and their legal
rights -
and to dismantle MDH's illegal warehouse of newborn-citizen DNA.
(Contact Sue Jeffers directly at: S1U2E3@aol.com
)
I might suggest that each of you check the national website to
determine how extensive the DNA testing is in your state,
especially
if you have children 10 years or younger. What you find may
sicken you.
The idea of the state, any state, claiming ownership of the DNA
of
anyone, most especially newborn babies is so repugnant to me that
I
cannot find the words to express how offensive this is; what an
unconscionable breach of humanity this comprises. This
issue is not
one of party affiliation or a right vs. left drama being played
out.
This is the groundwork for future discrimination that will most
likely surpass employment and insurance targeting but eventually
could be used to decide who lives or dies, or who can reproduce.
There is however a level of humor in all the debating going
on��
insurance company reps along with those of the business sector
assured everyone that these genetic tests will never be used to
discriminate in employment or insurance coverage. Now if
that didn't
make you laugh, nothing will.
But, all of us need to ask ourselves why this information would
be of
any use to Homeland Security? What possible reason could
they have
for cataloging and storing the genetic code of any newborn child?
In the end I find myself wondering where all these big religious
fomenters are that railed against gay marriage, stem cell
research,
the right to choose for women and a host of other issues that
would
supposedly destroy the traditional American family.
Wouldn't losing
ownership of your child's or your own DNA be far more devastating
than these issues? And yet, not one rock star preacher has
spoken
one word that I can find condemning this practice. Not a
peep! It�s
probably just a case of a lost message in all the speaking God
does
to them when he puts a "word of knowledge in their
hearts" about the
woes of society.
My advice? Find out what is happening in your own state and
to what
extent your state is testing and participating in this program
that
is so loaded with secret agendas and obviously in opposition to
many
state and federal laws. Maybe what is needed is a class
action
lawsuit brought in each state by parents who were unaware that
they
or their children no longer own their own DNA.