Archiver > GENEALOGY-DNA > 2010-02 > 1265614464

From: Asparagirl <>
Subject: Re: [DNA] CNN article: The government has your baby's DNA
Date: Sun, 7 Feb 2010 23:34:24 -0800

Some people on the list bizarrely seem to be overlooking the issue of
INFORMED CONSENT. Yes, genetic testing of infants to prevent horrible
diseases is an eminently noble cause. But to do it in such a way that
1) the parents are never informed it is happening (as we are for the
in-hospital vaccines, the in-hospital hearing test, etc.), 2) the
parents cannot choose to opt-out, and 3) the child's DNA is
automatically banked in perpetuity with the government-run lab instead
of being destroyed after all the tests are over -- all of these things
can and should be changed!

Look, I have no problem letting my own genetic foibles hang out in the
wind for everyone to see; I uploaded my mtDNA results in GenBank,. for
example. I can count three direct-to-consumer companies and two
non-profit groups that have my spit sample on file. But I am an adult
and can reasonably make that decision for myself. But why should my
child, who was born in 2007, have his DNA sample sit in a
state-controlled database potentially for the rest of life with no
notification, no consent, no legal way for me to now to ask them to
please delete his sample? Why are these samples now being used as
research material for the US government, even if done anonymously or
in the aggregate? How will anonymous medical information obtained
from these samples be used? Will they be used for the public good, or
to help private companies who may create drugs or treatments that will
be patented, creating profit off the literal blood of the public? Who
or what is the regulatory group that oversees each of these state
labs? And why is a throw-away article on the first time I've
ever heard about all this?

And those of you who are in the Armed Forces and have had your DNA
banked already would do well to remember that you, as an adult, had
the CHOICE to enter into your profession -- and if I am not mistaken,
you even had the CHOICE to bank your DNA or not, as it is not
mandatory for non-front-line troops to submit a blood sample. This
same choice is not being extended to the parents in this country, nor
by extension to the children who information is on file, some of whom
are only a few years away from adulthood.

We are talking about millions of DNA samples; laissez-faire won't cut
it here. Quis custodiet ipsos custodes?

- Brooke Schreier Ganz
Los Angeles, California

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