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From:
Subject: Re: [DNA] CNN article: The government has your baby's DNA
Date: Mon, 8 Feb 2010 12:39:33 EST


Repeating the URL you supplied for ready reference:

http://www.cnn.com/2010/HEALTH/02/04/baby.dna.government/index.html?hpt=C2

You asked why you are just now hearing about it. Probably a rhetorical
question, but I thought I might add a bit of background anyway. The issue has
been around for a very long time, but apparently it's gone viral recently, or
was worded in a way to catch your attention this time. Here's the first
article that cropped up on Google when I queried "Guthrie cards" -- it's dated
1994!

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1918213/

The reason for my search term is that I wanted to clarify what is stored:
it's blood spots placed on "Guthrie cards," from which DNA could be extracted
if desired. However, it is not routinely done. Guthrie cards have been in
use since the 60's, with storage policies determined at the state level. (The
same is true for the Armed Forces system -- the DNA is not extracted from
the blood spots, much less analyzed and stored in a database, until the need
arises to identify remains.

Newborn tests are not genetic tests in the sense of testing DNA for
mutations. They are metabolic tests, looking for the consequences of various
genetic conditions. An example is the level of the amino acid phenylalanine for
PKU (phenylketonuria).

The Minnesota case in the URL above mentions a gene "for" cystic fibrosis.
I am reading between the lines somewhat, but I suspect the actual gene
screening was conducted because of an elevated level of a metabolic product. The
mother might very well have given permission for newborn tests to be
performed for metabolic disorders, but not connected that term with genetics at
first. This is the first level of screening, which can have false positives
(the test is sensitive but not specific). Follow-up does involve checking say
30 of the most common cystic fibrosis mutations, which turned out negative.
The child's medical record is not going to say she has a positive test for
the cystic fibrosis gene.

http://cysticfibrosis.about.com/od/diagnosis/a/newbornscreen.htm

Now on to the main point of your message, informed consent. This concept is
relatively new, not part of the zeitgeist at the time Guthrie cards were
first stored. In the olden days, DNA testing wasn't even on the horizon. I
suspect it's mostly a case of "it's always been done that way," but times are
changing. You might also be interested in reading about what's going on in
Texas.


http://www.genomicslawreport.com/index.php/2010/02/02/newborn-blood-spot-litigation-70-days-to-destroy-5-million-samples/


Ann Turner

In a message dated 2/7/2010 11:35:43 PM Pacific Standard Time,
writes:

> Some people on the list bizarrely seem to be overlooking the issue of
> INFORMED CONSENT.


[snip]

> And why is a throw-away article on CNN.com the first time I've
> ever heard about all this?


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