DNA STUDY
ON CRYPTORCHIDS FAILS
OUR TEST
Barbara
J. Andrews
©
TheDogPlace
2005 -
What follows
is a widely circulated request for blood samples "to find the gene mutations
that cause cryptorchidism." The website
information does not state the DNA study is in any way to benefit dogs but the
email request below strongly suggests that. Without
research, there would be no advances in human or veterinary medicine so this
sounded pretty good but then things began to fall apart. First, the
"Cornell" email solicitation.
Subject: Cornell
study on Cryptorchidism
In the laboratories at the Baker
Institute for Animal Health, Cornell University, Dr. Vicki Meyers-Wallen focuses
upon inherited disorders that affect canine reproduction. Our goal is to
identify genes that have a negative impact upon reproduction, with the final
goal of producing practical tests to identify those carrying harmful mutations.
The long term goals are to reduce, and eventually remove, such deleterious genes
from purebred dog populations, thus improving the reproductive soundness of
purebred dogs.
We are asking for breeders and owners to participate in our study by allowing us
to collect blood samples from their dogs and related dogs. Those interested can
e-mail Dr. Meyers-Wallen at:
vnm1@cornell.edu
http://bakerinstitute.vet.cornell.edu/research/meyers_wallen/meyers_wallen.html
We are studying the DNA to find
the gene mutations that cause cryptorchidism (undescended testicles). Since this
is the most prevalent inherited disorder of the canine reproductive system, it
would be very helpful to have a test to detect carriers of these genes. Then
breeders could plan matings in which no cryptorchid offspring would be produced,
while allowing the offspring to receive other desirable genes that such carriers
may have.
We exposed this story in August of 2005 because such requests are increasingly frequent and
unfortunately, equally hard to verify. While requests for blood, tissue,
or DNA samples may be
perfectly legitimate, my litmus test for truth
has always been whether they are willing to provide answers to
reasonable, polite questions. Most welcome an opportunity to promote a concept
or project. Where there is evasion or secrecy, especially when asking for
donations of any kind, suspicions are aroused.
Medical studies come with a price tag and in today’s hotly
competitive market, obtaining study subjects is expensive. Life itself is a
trade-off, people frequently participate in drug studies in hopes of benefit for
themselves or others. Despite legal statutes, there is little disclosure in human medicine
and next to none in veterinary medicine.
We
should be clearly informed of the purpose to which donated blood
or DNA samples will be directed. Whether human or animal, DNA samples
become the patentable property of the company that collects them. We are entitled to assurance that tissue samples or DNA will
only be used for the
stated purpose and will not be sold or otherwise “used” without our
knowledge or consent. Information-peddling is big business and no educated person
today believes universities or labs are philanthropic institutions.
Update:
legal disputes over DNA ownership and privacy made network news in
2009. In 2010, a new predictive test for inherited breast cancer was
withheld from the women who donated the cells from which the test was developed.
The pharmaceutical company legally owned the women's cells and therefore, the
patented test but agreed to provide the test to the donors at no cost - just
before the documentary was aired.
We willingly
give blood to the Red Cross, knowing it will be sold to the hospital (to
cover costs) which will mark it up and sell it to the patient. That’s
okay. We know how it works and that our gift to humanity could save a life.
Giving unknown researchers your dog's blood for an undisclosed
purpose is decidedly different!
There’s none
among us who wouldn’t rejoice at the thought of finding and eliminating a gene
for retained testicles, which by the way, is not the “most prevalent”
inherited disorder of the canine repro system. That misstatement alone is cause
to reject the stated purpose and the validity of this particular study.
As has been
speculated by breeders who keep track of such things, the gene for
cryptorchidism can be carried by the FEMALE dog, analogous to von Willibrand’s disease (bleeder) which is carried by the female. It is noteworthy
that such a possibility was not mentioned and it appears that only male dogs were
acceptable for DNA research.
Exploration of
the website links validated Dr. Vicki Meyers-Wallen’s impressive credentials but
also raised questions. The first statement regarding the research is “We
are studying animal models of inherited human disorders as a means to
understand sex determination and differentiation at the molecular level.”
Second paragraph, again relating to humans, “Affected individuals do not
have a Y chromosome: the karyotypes of affected individuals are the same as
those of normal females.” That could explain why blood samples from females are
not necessary, which means breeders would not
learn whether or not female dogs carry the gene.
Third
paragraph finally mentions dogs but the cited abnormality has nothing to do with
retained testicles. “A second disorder that we are investigating,
which occurs in humans and dogs, is Persistent Mullerian Duct Syndrome (PMDS)
in which the oviducts and uterus develop in otherwise normal males.”
Finally, the fourth and concluding paragraph, quoted in its entirety, gets to
the part of the study that relates to dogs “A third disorder that we are
investigating in collaboration with other investigators is cryptorchidism, which
is failure of the testes to descend into the scrotum. Our objective is to find
the genes responsible for this disorder in the dog. We are currently collecting
DNA samples from cryptorchid males and their parents and grandparents in canine
families.”
To a
wordsmith, "in collaboration with" sounds like "we will sell or share samples
with someone else." I could
find nothing else that relates to dogs nor does it state if or how results of the study would be made public or be of benefit to dog breeders. No explanation as to why
such a significant amount of blood is required as opposed to DNA studies from a cheek swab, a single hair, or even a 3,000 year old speck of
dust from a mummy’s tomb.
Before
deciding to help promote the research, we decided to ask a few questions.
This was prompted by a recent experience wherein a crew representing
themselves as veterinarians from a "vet university" appeared at the Oklahoma Toy Specialties
to collect blood samples. They gave their pitch to a full meeting room
of interested owners. The first hitch came when concerned owners asked
about a draw from jugular vein of their tiny toy dogs and the collection
team refused to clarify whether they were vets or students, or even lab
techs. Amid the clamor over that, I asked if they could assure us that the DNA
and blood samples would not be sold or otherwise shared. They said
they didn't know, hastily left the meeting, and I'm told that no owners donated their dog's throats or DNA
to the "vets"
that day and they were not seen the following day. Based on that experience, we decided
to contact Dr. Meyers-Wallen.
I prefaced by request for
more information by explaining that The Dog Press is the largest
subscriber-based website in the U.S. and would be glad to help promote their
project. I asked whether there had been any study on the hereditary
factor of retained testicles and whether there would be any charges
associated with submitting a sample. Lastly, I asked what would be
done with the database of information and the samples obtained, thanked Dr.
Meyers-Wallen for her anticipated response, and again stated that we hoped
to support the project by informing our subscribers.
From: Vicki
Meyers-Wallen
[mailto:vnm1@cornell.edu] Sent: Thursday, August 11, 2005
To:
Editor Subject: Re: QUESTION re cryptorchidism study DNA sample
Dear Ms. Andrews,
Thank you for your willingness to help. I am hesitant to
post this further since I am presently experiencing a tremendous response- so
much so that I am having trouble keeping up with the correspondence right now.
After we evaluate how many samples we actually receive from this response, I can
tell whether we actually need any more.
Thank you for your patience,
Vicki N. Meyers-Wallen, VMD,
PhD, Dipl. ACT Associate Professor
Dept. of Biomedical Sciences, J.A. Baker Institute for Animal Health,
College of Veterinary Medicine, Cornell University, Ithaca, NY 14853 USA
Telephone: 607 256-5683 FAX: 607 256-5608 e-mail
vnm1@cornell.edu
http://bakerinstitute.vet.cornell.edu/research/meyers_wallen/meyers_wallen.html
To
which I responded:
“…
Your failure to address any of my questions leads me to believe that this
DNA sample collection may not be as altruistic as has been portrayed. Could
that be true?
“If you have a moment to
reply to all those emails from people who are responding, then
surely you have time to answer basic questions? My time is limited as well but
if it is a worthy project and will actually provide some tangible
benefit for the dogs instead of some new income producer,
it deserves promotion.”
And
she replied, in total:
“I am sorry that you feel that way.”
No signature and no pretense at civility or
cooperation. We leave you to interpret this information as you will.
We're told "It never hurts to ask" but perhaps it does.
Editor's update: as of May 2010 we have seen no news on any genetic
discoveries relating to canine reproduction, no DNA test for a genetic
component for cyrptorchidism but requests for blood and DNA samples
continue.
Capt. Haggerty responds to this
article, explains more on genetics & missing testicles
http://www.thedogplace.org/Genetics/Cryptorchid-Monorchid-050910061-Haggerty.asp
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