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From:
Subject: Re: [DNA] CNN article: The government has your baby's DNA
Date: Mon, 08 Feb 2010 08:46:53 -0800


I haven't commented on this list in quite a while, but this one
deserves a comment. I'm a currently licensed & actively employed
registered nurse. My entire career in nursing has been in acute care
facilities (hospitals). I really can't think of much that we do for
which we do not obtain informed consent, *except in cases where there
is an immediate life-threatening emergency involving someone who is
not capable of consenting to a procedure due to loss of
consciousness, impaired cognitive ability (dementia or an acute
metabolic disorder causing temporary dementia), developmental
disability, etc.* In those cases, every possible effort is made to
obtain consent from that person's legal guardian or next of kin. If
that is not possible after continued efforts, or especially when
intervention is an emergency "to save life or limb", a physician must
document that there were no alternatives to proceeding with care
without the express consent of the patient whose health & well being
are in immediate jeopardy.

In the event that a reasonably competent individual who is "oriented
to time, place & person" refuses to give consent & expressly refuses
treatment when the threat to their life has been thoroughly explained
to them, they have every legal right to refuse & leave the facility
"against medical advice". ** I absolutely & unequivocally support
their right to do so.** The right to determine your own course of
action when facing an extreme personal crisis is the most basic of
human rights, far outweighing almost any other that I can think of.

When someone is admitted to a hospital, they are required to give
consent to all of the miscellaneous & sundry lab tests that will be
involved in their care during their hospitalization. Each & every lab
test or other diagnostic test certainly does not require individual
consent. To do so would be extremely cumbersome & problematic. At
admission, the consent that anyone gives is stated in a manner that
such routine tests are described to the degree possible, so that
anyone being admitted has at least a rudimentary understanding that
they are consenting to the various diagnostic tests that are part &
parcel of everyday healthcare in an acute care facility. There is at
least one exception to this that I can think of offhand. When a
healthcare worker is accidentally injured with a sharp (needle,
blade, etc.) that is "contaminated" with a patient's blood or bloody
body fluids, in most (??) states. no additional consent is required
by law to test that patient for viral hepatitis & HIV, two blood
borne diseases with particularly onerous implications for anyone
infected. This is done so that the healthcare worker can take
measures to try control any potential infections from the injury.
There are probably some who might suggest that we should all just
accept the risk (no right to test the patient for HIV & hepatitis),
but I'm sure there would be a lot fewer healthcare workers if that
were the case.

Now, having covered the basics, I would be remiss if I failed to
point out that any additional "invasive" procedures that involve
significant risk require *additional informed consent*. The use of
the term "informed consent" implies that the person undergoing the
procedure to the greatest degree possible understands the potential
risks & the potential benefits, & has made a carefully considered
choice to proceed. All to often, "informed consent" is considerably
less in reality than what is implied on the documentation. Health
care sometimes involves very serious risks. It doesn't matter to any
one that the odds of a very bad outcome are one in a million, if they
are the one in a million. That said, the 999,999 that don't suffer
that disaster don't have a problem with it. In reality, there is a
spectrum of optimal versus sub-optimal outcomes for any course of
therapy, & every effort should be made to make that clear to anyone
considering any course of therapy.

OK, A VERY LONG WINDED INTRODUCTION TO THE BASICS OF INFORMED
CONSENT, so here's the clincher. Keeping a newborn child's DNA test
results on record for the remainder of their lives, & especially on
their health insurance records, CLEARLY, has long term implications
for the child. WHY NO INFORMED CONSENT ?? To put it quite bluntly, my
personal opinion, it is a gross violation of the family's right to
privacy. I think that an overwhelming majority of parents would agree
to the testing when it was explained, in exactly the same way that
any other test is consented. Those that opt out have every right to
opt out. The testing that is done has nothing whatsoever to do with
"emergency care". It is done specifically to project potential long
term health risks.

When "the state" starts telling citizens that they don't have the
right to control their own medical care, it is perilously close to
telling citizens that they don't have the right to control any aspect
of their own futures. The United States of America has a very long
history of opposition to that kind of state control, & we ignore it
at our own peril.
Pat


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