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Archiver > GENEALOGY-DNA > 2004-01 > 1073769034


From: "Lowe DNA" <>
Subject: RE: [DNA] PARANOIA in USA re: DNA
Date: Sat, 10 Jan 2004 15:10:54 -0600
In-Reply-To: <6.0.0.22.0.20040110094427.066bb008@wells.org>


Orin...

You do have a very valid and frightening point.....

However I believe it is the "potential buyers" of these samples that need to
be reined in long before we get to this juncture. Everything in this
country "follows the money" and if there is buck to be made in these genetic
samples being sold it will happen; for example, the sale of personal records
I railed about the other day and sold to Ancestry.com that "just so
happened" to be available to the market.....

Today the medical and auto industries have significant losses with the "bad
guys" as we used to call them to prevent fraud.....So insurance pools (no
company affiliations) were set up to exchange information when the losses
went up in a zip code area to catch these bad guys.....Today a politician
trying to rein in this exchange of information would find their head on a
platter...

And if a similar genetic database (like the govt. genetic database(s) to
find the bad guys and solve cold-crimes) were setup to hold the reruns of
these lab samples to detect genes responsible for certain cancer, heart
attacks, and mental disorders it would pay for itself many times over....and
potentially make the owners very wealthy..Business ethics seems to have gone
out the window as shown thru by executive behavior at ENRON, WORLDCOM, MCI
and a dozen others company where the SEC has concerns about....so it would
not be hard to get around govt. regulations in this area.....especially
offshore...

So how do we prevent not only of the illegal transfer or sale of sample and
unauthorized DNA analysis....???

I am at a loss here.

Bill


-----Original Message-----
From: OrinWells [mailto:]
Sent: Saturday, January 10, 2004 11:59 AM
To:
Subject: RE: [DNA] PARANOIA in USA re: DNA


At 03:27 PM 1/8/2004, Lowe DNA wrote:
>Translation: This gentleman is not informed enough to know that testing the
>NRY portion of the Y chromosome tests only a tiny fraction on the Y
>chromosome....


The problem is much deeper than the fact that "only" the Y-chromosome or
mtDNA is used in the analysis. The problem is that the DNA extracted is
the individual's complete DNA. There is no practical way to JUST extract
the y-chromosome and discard the rest. So the real concern, if they all
thought it through, is what "could" happen to the saved sample after the
testing. We know the labs store it for a time. One even uses this as a
marketing feature.

The potential donors need some iron-clad assurances that if the lab were to
go out of business the samples in storage would not end up in the "wrong"
hands or that some soon-to-be ex employee did not see an opportunity to
filch samples and sell them to someone who could manage to get the
information into the hands of the Insurance, Medical or government
sectors. It isn't that anyone has a disease or criminal history, it is the
uncertainty and even outright distrust of any third party to do the right
thing in the face of potential for profit. No matter what is done some
people will still distrust "the system" and will not participate.

My experience is that there is no way to dissuade the people with this kind
of thinking. The fortunate part is they represent a minority of the
potential donors. At least in the group who have an interest in family
history. It may be a totally different story when you are looking at
people solicited "off the street" to participate.

What is needed is some reasonably iron-clad fool-proof system that would
assure the donors that their sample could not be misused no matter what
might come about.

We need also to recognize that no matter what assurances any of the labs
might make in their consent forms or statement of security procedures it
will not reassure everyone. We just need to find a way to cover the
fence-sitters.




Orin R. Wells
Wells Family Research Association
P. O. Box 5427
Kent, Washington 98064-5427
<>
http://www.wells.org
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