Purebred Dog Health
Databases to Combine Forces
COLUMBIA, MO --
Officials from two of the nation's major purebred dog genetic health
registries, the Orthopedic Foundation for Animals (OFA) and the Institute
for Genetic Disease Control (GDC), announced their plans to combine forces
in the ongoing effort to help breeders raise healthier dogs.
"We are very pleased
to be able to bring the strengths of these two organizations together,"
said Eddie Dziuk, OFA's chief operating officer. "Improving the health of
companion animals is our single focus, and this combination of resources
will offer significant benefits to breeders and owners alike."
"This is a very
promising development," said GDC executive director Dr. Paul W. Poulos,
Jr. "We are seeing a high level of concern about genetic disease from
breeders in the US and many other countries. We've got the tools that can
make a difference, and it's clear that the time has come for us to link
arms to reach a much larger number of breeders."
The organizations
currently provide similar services to breeders, including health databases
and evaluating dogs for hip dysplasia and other serious inherited
problems. OFA, formed in 1966, is recognized throughout the purebred dog
world for its huge database and for its work in evaluating the health of
individual dogs. GDC was created in 1990, offering an innovative service
that emphasizes sharing both positive and negative health information on
whole families of dogs.
According to Dziuk,
staff from OFA and GDC will soon begin work to merge the GDC database into
OFA. In addition, the OFA will be releasing a revised website. The new
website will provide breeders with easier ways to search and view the
health test results from both databases. The merge will increase the
number of dogs whose data can be seamlessly accessed by the Canine Health
Information Center (CHIC), the new program jointly sponsored by the OFA
and the AKC/Canine Health Foundation. CHIC is a database that pools
information from multiple sources based on recommendations that are parent
club driven.
OFA and GDC staff
will also begin to develop a joint educational and informational focus.
Both GDC and OFA will continue to operate independently until the merge
goes into effect sometime during the summer of 2002. At that point, all
registrations would go to OFA.
"All of the
information currently in the GDC database will be available through the
OFA site after the merge," Dziuk explained. "And with the recent OFA
option that lets breeders share information about affected as well as
unaffected dogs, we expect to see a steady increase in the number of
people interested in looking at the genetic health of whole families of
dogs rather than simply at the health evaluations of an individual dog."
Most canine genetics
experts agree that breeders can make the best progress against genetic
diseases by not only knowing which individuals in a dog's family are
normal, but also which are affected or carry defective genes.
"There are huge
benefits to breeders in combining the GDC and OFA databases," said Dr.
Poulos, "but at the same time we needed to be certain that GDC customers
will have essentially the same access to the information as they now have.
With OFA's commitment to encouraging the open sharing of health
information, we see this merge as a significant advance for the future
health of purebred dogs."
Dr. Gary Johnson,
associate professor of pathobiology at the University of Missouri School
of Veterinary Medicine and a leading researcher in canine health issues,
commented, "As more breeders realize the importance of health testing and
information sharing, the database services of the OFA and GDC are playing
a growing role in assisting breeders to make more informed breeding
decisions."
For more
information, or to follow progress of the planned merge, please visit the
OFA and GDC websites at www.offa.org and
www.vetmed.ucdavis.edu/gdc/gdc.html.
END

OFA/GDC Merge: Questions and Answers
Back to top
Q. What are the
reasons behind the merge of GDC with OFA?
A. When GDC was
formed in 1990, it was the only US multi-breed open registry. GDC promoted
the concept and gave breeders the ability to openly share genetic health
information on their dogs. In January 2001 OFA began to offer a similar
service, allowing users to make abnormal results available on affected and
carrier dogs in addtition to normal results on unaffected dogs. Rather
then have two national registries serving essentially the same purpose and
audience, GDC and OFA feel that all open registry health information
should be gathered in a single location. As a large, financially stable
organization, OFA is in a better position than GDC to reach, inform and
educate breeders and breed clubs about the benefits and uses of the open
registry. For its part, GDC brings to OFA well-developed open registry
concepts and experience, as well as several additional genetic disease
registries.
Q: How will the
merge take place?
A: In the summer of
2002 GDC will merge its entire data base into the OFA database, and will
close its offices in Davis, California. OFA will make changes to its web
site based on GDC concepts that will allow users to view evaluation
information much more easily on dogs and their close relatives. Both OFA
and GDC recognize the crucial need for breeders to be able to access both
normal and abnormal results on family groups of dogs in the most useful
way possible.
Q. Will the merge
destroy any information on dogs in the GDC data base?
A. None of the
evaluation information on dogs in the GDC data base will be lost. Both GDC
and OFA information will be available on-line through the OFA website.
Q. How will GDC
users get access to information in the GDC database?
A.
Information on dogs originally registered with GDC will be available
through the OFA web site. OFA will add features to their web site that
will give users easy access to information on a dog's close relatives,
including siblings, half-siblings, parents and offspring. This will
provide "family" information on a dog similar to what the GDC KinReport
provides. Users will continue to be able to get information and KinReports
on dogs registered with GDC prior to the merge through the GDC on-line web
site.
Q. When GDC
closes, what will breeders who want to use an open registry do?
A. Breeders
may register results with the OFA and select, on the OFA form, the
authorization to release all results. As with GDC or any open registry,
the key to real usefulness is having lots of family groups of dogs
registered, so it will continue to be extremely important to encourage
breeders and owners to health test, register and release all results on as
many dogs as possible.
Q. Will OFA
change its registration forms as a result of the merge?
A. OFA is currently
upgrading its data base system and making changes to its forms. OFA will
add new forms and informational material related to the GDC disease
registries that OFA does not currently have (example SA - sebaceous
adenitis).
Q. How will the
differences in requirements between OFA and GDC be handled? For example,
GDC allows hip dysplasia evaluation at a minium 12 months, in contrast to
OFA's 24 month requirement.
A. OFA already makes
distinctions in its database for dogs evaluated at less than 24 months,
and for other variables such as heart evaluations performed by
cardiologists versus general practitioners. Any such distinctions will
continue to be used, and new ones will be added as needed. All GDC hip
evaluations on dogs 12 months and older done prior to the merge will be
available on the OFA website.
Q. Does this mean
OFA will now evaluate dogs for hip dysplasia at 12 months, like GDC?
A. OFA will continue
to do preliminary evaluations for hip and elbow dysplasia for dogs under
24 months. Results from preliminary evaluations are only released to the
owner.
Q. GDC has
several disease registries, such as SA (sebacious adenitis), that OFA
doesn't have. What will happen to those registries?
A. OFA will
adopt all of those GDC registries except the GDC eye disease registry
since a defined protocol for examination and registry for eyes is already
in place through CERF. However, the ability for individual owners to
choose to release all results of CERF evaluations through OFA does not
exist at this time.
Q. GDC also has a
number of research databases on diseases such as cancer, dwarfism and
portosystemic shunt disease. What will happen to that information?
A. All research data
will continue to be archived at GDC. The OFA and GDC will explore the
possibility of continued data collection on particular diseases, such as
cancer, based on demand.
Q. How will this
merge affect the OFA database?
A. The merge will
not affect information currently in the OFA data. Merging the GDC database
will have no negative affects on the existing OFA data, and will add
extensive information gathered during the past decade on more than 20,000
dogs.
Q. How will you
avoid confusion between dogs that are currently registered with both GDC
and OFA?
A. OFA and GDC
results will remain distinct in the merged database. In other words, when
you view information online on a dog with hips evaluated by both GDC and
OFA, both results will be shown.
Q. What is the
relationship between the Canine Health Information Center (CHIC), OFA, and
GDC?
A. The merge will
increase the number of dogs whose data can be seamlessly accessed by the
Canine Health Information Center (CHIC), the new program jointly sponsored
by the OFA and the AKC/Canine Health Foundation. CHIC is a database that
pools information from multiple sources based on recommendations made by
breeders through their parent clubs. GDC is not involved with the CHIC
program, but after the merge the GDC data will be available for use in
CHIC.
Through the CHIC program breeders use a
single OFA database to maintain health test results that may come from a
variety of sources. The program is based on the realization that each
breed may face a unique set of health issues, as well as challenges to
gaining maximum participation in health testing..
Breeders who want to use the program work
with CHIC through their parent club to identify the most troubling genetic
diseases for their breed and the most acceptable tests for those diseases.
(Any CERF and OFA test results in a club's requirements are shared
automatically with the CHIC program.) Clubs may also decide to collect
anecdotal information on a disease for the database. Later, as screening
tests and modes of inheritance are determined, the club may choose to add
a test for that disease to its CHIC program requirements.
As a breed's database grows, breeders and
owners can use the information on closely related groups of dogs in a
number of ways. For example, they can assess a dog's risk for carrying the
defective gene for PRA or determine the probability that the offspring of
a mating might inherit a number of the genes involved in hip dysplasia. In
addition, researchers may use the data for DNA or epidemiological studies.
CHIC encourages owners to release all
test results for public access, including results on affected dogs and
carriers. Dogs for whom all results have been released receive a CHIC
number and a CHIC report listing those results and other information.
END |

Oct 1, 2001
| The Genetic
Pedigree: a powerful tool against canine genetic disease
By George G. Packard
georgepackard@conknet.com
(Copyright 2001 George Packard) (Permission for non-commercial electronic
distribution granted. Contact author for permission to reprint.)
As a breeder of
purebred dogs, you don't need a PhD in Genetics to understand that your
job comes down to a balancing act between selecting for the traits you
want, and selecting against the traits you don't want. Easy to say, but
not so easy to do.
In fact, one of the
measures of the real difficulty of dog breeding is the current alarm among
breeders and buyers about the increasing amount of genetic disease in just
about all breeds. And the concern that nobody seems to be able to do much,
if anything, about it.
Common wisdom about
getting rid of a genetic disease like hip dysplasia in your line is to try
to breed away from it by finding dogs which seem to be unaffected by, or
clear of, the disease. It's an approach that works fairly well, unless one
or both of the dogs happens to be carrying defective genes.
And, unfortunately,
canine geneticists tell us that all purebred dogs carry several defective
genes. So trying to reduce genetic disease in your line by selecting
apparently normal dogs will, at best, move you towards the breed average
for the disease you are worried about. At worst it will bring even more
defective genes into your line. Imagine trying to fix your car's engine by
randomly swapping parts from your neighbor's car.
Select against
defective genes
The only really
effective way to attack the problem of genetic disease is to actively
select against the defective genes, rather than trying to select for the
most normal dogs you can find. It's a way of thinking about breeding that
seems counter-intuitive, until you realize that if you know who the
affected and carrier dogs are among the close relatives of the dogs you
want to breed, you can lower your risks dramatically by making smart
choices.
That's why breeders
(and puppy buyers) show more and more interest in having dogs screened for
genetic disease (using conventional diagnostics as well as the new genetic
testing) and in sharing that health information openly. Why share the
information? Because you can't select against the defective genes unless
you know which dogs are carrying them.
But whether that
health information is in an open registry, or penciled into notebook as a
result of hours and hours of research and detective work on your part, you
still need a way to visualize the relationships between the members of a
dog's family in order to figure out where the least amount of risk is.
The genetic
pedigree as a tool
That's the beauty of
what is known as a genetic, or geneticist's, pedigree. This is not the
traditional lineage pedigree that lists parents, grandparents, etc. It's a
chart of close relatives that shows in as much detail as possible which
dogs do, and don't, carry defective genes. This tool is invaluable if you
are trying to select against a polygenic disease like hip dyplasia. Even
though you can't tell how many of the genes that create hip dysplasia a
dog may be carrying, you can, with enough information about affecteds,
make a relatively strong assessment of risk. For a single gene disease
like PRA, you can do an even better job of predicting risk.
Remember that you
are selecting against defective genes, and not defective dogs. You need to
be able to preserve as many of the good traits of a particular dog as you
can. So you can use the genetic pedigree to analyze the risk of whether or
not a particular mating will increase or decrease the probability of
producing carriers and affecteds in the puppies. You may be able to
preserve the traits you need from a sire, but select against genetic
disease in his line by mating him with a dam with a very low risk for
passing along the defective genes. (But you must evaluate the puppies!)
"So, now I can look
at the geneticist's pedigree and see at a glance what genetic defects my
dog, Kyra, has in her lines," says White Shepherd breeder Judy Huston, the
health and genetics chairperson for her breed club. But that's only a part
of the job, Judy explains. "What's next? Now I need to make a list of the
potential studs and find out what their defects are. Oh no, not again! I
thought I was finished. But the good news is that these dogs are related
and most of their information I already have--but not all of it. So, more
email goes out, more requests for information and more willingness on the
part of the breeders to help me out."
The genetic pedigree
can be as simple as a chart of a dog's parents and littermates. Or as
complicated as a 10-year overview of the entire family of a dog, listing a
hundred relatives and all the litters produced by all matings, and showing
carriers, multiple traits, deaths, birth dates and more. Accompanying this
article is an example of a very simple genetic pedigree, based on
information from a GDC
KinReport™
(GDC maintains a national and international open registry and provides
health information on a dog and its close relatives). For information on
how to draw and use a genetic pedigree, see Dr. George Padgett's recent
book, Control of Canine Genetic Diseases (Howell Book House, 1998). (Text
continues below picture)

Collecting the
information to draw a genetic pedigree based on the GDC open registry
requires several steps. The first would be to search the GDC database for
the dog you are interested in to find out how many close relatives are
also registered. If you find a dozen or more, you would then order the GDC
KinReportsª that cover those dogs.
You can then draw
the pedigree and include the evaluations for each dog. You could then fill
in missing information on a litter, perhaps, by contacting the breeder or
other sources.
As an example of a
basic way to use a genetic pedigree, let's say that this one shows
information on a simple recessive trait such as PRA (progressive retinal
atrophy). Each darkened square or circle is a dog affected with PRA, but
we need to figure out which dogs may be carriers. If one of the puppies is
affected, it means that both parents carry the gene. Remember that unless
you have a DNA test for PRA for your breed, you can't tell if a parent is
a carrier until he produces a puppy that is affected.
Because a puppy in
Litter C is affected, we know that both Ann and Art are carriers. And
because two puppies in Litter H are affected, we also know that Bob is a
carrier. Using the same logic, you can use the genetic pedigree to learn a
lot about these dogs.
Note that there is
only full information on one litter in this pedigree. And that litters K
and L are very important, but there is no useful information currently in
the registry. Registries are only as good as the amount of information in
them, and that is why GDC emphasizes registering entire litters.
George Packard
manages Information Services for GDC. [http://www.vetmed.ucdavis.edu/gdc/gdc.htm]
To subscribe to the GDC email Newsnote, send your request to georgepackard@conknet.com
END |
Sept. 20, 2001
| How to Select Against
Genetic Disease with Knowledge, not Hope
By George Packard
georgepackard@conknet.com
(Copyright 2001
George Packard)
(Permission for
non-commercial electronic distribution granted. Contact author for
permission to reprint.)
High anxiety about
genetic diseases comes with the territory for anybody who is considered to
be a responsible breeder these days. In fact, if you are breeding dogs,
and you aren't worried about genetic disease, you'd better hold off on
that next mating until you've done your homework.
Canine geneticists
estimate that the average purebred dog is carrying at least 4-5 defective
genes. To put it another way, when you are looking at that gorgeous
champion with normal hips you are also looking at a dog who is carrying
the genes that can cause several types of genetic disease. And unless his
owner has a detailed genetic pedigree on this dog and is willing to share
it with you, you have no way of knowing what those disease genes are.
That champion may be
carrying a recessive gene for PRA, and if he's bred with a bitch who is
also carrying the PRA gene, the disease will show up in the puppies. And
even though he has normal hips, he may be carrying some of the recessive
genes involved in hip dysplasia. If you mate him with a bitch who is
normal but also carrying recessive genes for dysplasia, you'll suddenly
find yourself, heartbroken and bewildered, with dysplastic puppies.
"I'm not worried,"
you may say, " because soon we'll have DNA tests that will solve these
problems." That's all well and good if researchers have developed a test
for the single gene disease your line is troubled by. But if that test
doesn't exist, are you willing to wait five or ten years for your turn to
come? And that's assuming you'll persevere as a breeder beyond the
six-year average when most people give up, often because they can't seem
to stop producing puppies with genetic diseases.
Of course, we are
only talking about tests for single gene diseases. Most of the severe
diseases like hip and elbow dysplasia, cancer and epilepsy, are polygenic,
caused by the complex interplay of many genes, and no researchers have
come close to developing a polygenic gene test.
Are you willing to
wait 20 years for a gene test for hip dysplasia? Are you willing to watch
another 30 years go by with no significant decrease in hip dysplasia among
purebred dogs?
Breeders in Sweden
in 1976 weren't willing to wait, and so they set up an open registry and
started screening all their dogs. By 1989 they had achieved a 50 percent
decrease in moderate to severe hip dysplasia in almost all breeds
("Breeding Healthier Dogs in Sweden": Ake Hedhammar, Tijdschrift voor
Diergeneeskunde, April 1991).
What is the secret
of this astonishing success? Nothing more profound than the fact that each
breeder made it his or her business to find out where the carriers and
affecteds were in a dog's close family Ñ siblings, half-sibs, offspring,
parents and parents' siblings. Using relatively simple methods, they could
then predict the risk of inheritance of defective genes in any mating. A
few breed clubs in the US have shown similar successes with targeted
genetic diseases.
But the majority of
our purebred dog breeders, and the major institutions that support them
such as AKC and OFA, have shown little or no interest in using open
registries combined with proven breeding methods to reduce genetic
diseases. Times are changing, however. In 1990 GDC (Institute for Genetic
Disease Control in Animals, (www.vetmed.ucdavis.edu/gdc/gdc.htm)
established an international all-breed open registry based on the success
of the Swedish model. In the following decade thousands of breeders began
to register their dogs and to make breeding decisions in accord with the
knowledge of where the carriers and affecteds were in a particular dog's
family .
Recently, GDC
started an advocacy campaign to call for the widespread use of open
registries and appropriate breeding methods. The strong response they are
getting from breeders throughout the purebred community confirms that the
demand for open registries is increasing rapidly. But the reality is that
no open registry, whether it is the international GDC registry, or an open
registry set up by a breed club, can be useful until it contains
significant number of dogs registered in close family groups.
Detractors of the
open registry concept point to this weakness but ignore the fact that even
without enough information in an open registry, breeders can still make
progress against genetic disease by doing the legwork themselves.
What can you do?
-- Register your
dogs in an open registry and urge every breeder you know to register
also.
-- Do whatever you
have to do to find out where affecteds and carriers are among a dog's
siblings, offspring and other close relatives.
-- Don't breed to
a dog whose owner will not supply that information.
-- Screen as many
of your own dogs as possible, and supply that information to buyers and
breeders.
-- Contact your
breed's health committee, the AKC and OFA and strongly urge them to
actively promote the use of open registries. Urge your health committee
to put GDC on the list of approved registries.
For specific
information on breeding methods and genetic disease, start with these
books: Control of Canine Genetic Diseases; George A. Padgett, DVM, Howell
Book House, New York, 1998 Genetics of the Dog; Malcolm B. Willis, Howell
Book House, New York, 1989 Several very good articles on basic genetics
for dog breeding: http://www.magmacom.com/~kaitlin/diversity/genetics.html
Subscribe to the GDC
email Newsnote. Send your request to georgepackard@conknet.com END
|
June 25, 2001
| The Breeder's
Toolkit:
A GDC interview with
geneticist, breeder and author Malcolm B. Willis, BSc, PhD
Many breeders are
familiar with geneticist Dr. Malcolm Willis' articles in the AKC Gazette
and his books, including "Genetics of the Dog". In this interview Willis
talks with GDC's George Packard about the British scheme for reducing hip
dysplasia and about the essentials that every breeder needs to know.
Following is an
excerpt from the interview:
"Finally, all
breeders will produce defects if they breed long enough. Those who tell
you that they do not produce defects have either stopped breeding, breed
hardly at all or are being economical with the truth. There is no crime in
producing a defect. The crime, if any, lies in what you do about a defect.
If you bury yours quickly and keep quiet about it, and I do the same with
mine, then sooner or later we may use each other's dogs and pay the
penalty for not having been honest with one another and with the breed we
probably profess to love."
To download an
Adobe Acrobat PDF of the interview, click here:
Willis Interview
To receive an
email version, email your request to:
georgepackard@conknet.com

GDC sees strong
support for advocacy campaign
In the past month
GDC has received hundreds of emails in support of the GDC advocacy
campaign for open registries, including many from people who were not
aware of GDC and our existing open registry.
The following two
quotes from breeders are typical of what we are hearing from people:
"...I am interested
in helping to promote the Open Genetic Registry. I have been "in dogs"
since the late 60's and have always felt that the only way to help stop
the suffering because of the many genetic problems found in dogs is for
breeders to share all knowledge. Please sign me up for your email
discussion group and feel free to contact me for any assistance that I
might be in promoting this cause."
"...after I read the
latest GDC news note, I sent several emails to various AKC departments
stating my point of view that I would like to see AKC give substantial
support (financially and in public education) to "open registries." I know
many breeders feel the same way I do but the wheels so slowly turn!"
Our goal is to build
a list of 5000 breeders and owners who want to ensure that open registry
services remain available in the U.S. and who are actively working to
promote the use of open registries to help breeders reduce the prevalence
of genetic disease in their lines. This group is already heading towards
1000 members, and with numbers like that, we will definitely have the
clout and the numbers to get the word out. For information on what you can
do to help, contact
georgepackard@conknet.com |
May 15, 2001
|
GDC sees challenges ahead, announces new focus on advocacy
After a decade of
running the only national/international all-breed genetic disease open
registry, GDC has become the registry of choice for thousands of breeders
throughout the purebred dog world. Unfortunately, we are finding that
volumes of registrations continue to be lower than expected, in part
because of resistance by a majority of breeders to sharing information on
affected or carrier dogs. Low numbers of registrations decrease the
usefulness of the registry to breeders, and put heavy financial pressure
on GDC.
In
the light of this challenge, GDC is shifting focus this coming year to
exploring new and more effective ways to make an impact on the widespread
prevalence of canine genetic diseases. We need to reach a significantly
larger audience of breeders with information about using the open registry
and the need to know where the affecteds and carriers are in a dog's
family before making breeding decisions.
Links for more
information:
April 30, 2001 Letter to GDC Customers
Frequently Asked Questions: Challenges for
GDC
Article: "GDC Calls for Widespread Use of Open
Registries"

|
| April 30, 2001 Back
to top
Important news
for GDC customers, friends and supporters:
As you know, GDC and
thousands of dog owners and breeders, veterinarians, and researchers have
been working for more than 10 years to build the GDC open registry into a
valuable tool in the fight to control genetic disease. We have made real
progress, but despite repeated calls from the world’s top canine
geneticists in magazine articles, books, and even at AKC conferences, the
majority of breeders and breed groups in the US still actively oppose or
do not understand the importance of using an open registry.
For an open registry
to be useful, large numbers of closely related dogs (siblings, offspring
and close family members) must be registered so that breeders can create
valid genetic profiles of the dogs they are interested in. Building this
type of a registry has been GDC’s principal effort during the past decade,
but it is an uphill struggle. Even with very strong support from many
breed groups, breeders and owners, GDC has not been able to build the
necessary large volume of useful registrations to make the registry both
financially stable and effective as a tool for breeders.
In the light of this
situation, the GDC board of trustees has looked carefully at how the GDC
open registry is contributing to the control of genetic disease in
purebred dogs. Their conclusion is that without significantly higher
volumes of useful registrations as well as better information for breeders
about effective breeding practices, the GDC registry will have very little
impact on the prevalence of genetic disease. Additionally, without
widespread support from the major breed clubs and national organizations
such as the AKC, GDC (or any other national multi-breed open registry)
will be unable to achieve a “critical mass” of registrations.
Yet breeders and
owners are desperate for help, now. While DNA testing may be useful for a
few single gene diseases like PRA in particular breeds, tests for
widespread polygenic diseases like hip dysplasia are many years or even
decades away. This past year at GDC we have seen a sharp increase in
requests from breeders for help with breeding decisions that are currently
beyond GDC’s scope. These are responsible people who are alarmed by the
amount of genetic disease they are seeing in their breeds. And they are
distressed because they are not getting the straight answers and practical
information they need from the AKC and other traditional sources.
Therefore, in order
to use its resources most effectively in the coming year, GDC has made the
decision to shift its emphasis. We will work to produce educational
programs for veterinarians and breeders and to create a multi-breed
advocacy organization that will push for the use of open sharing of health
information as the fundamental means for reducing genetic disease. Our
shift in focus is driven by the realization that the best open registry in
the world won’t help if breeders won’t use it or don’t understand how to
use it in their day-to-day breeding decisions.
During the past ten
years, GDC has depended on several very generous donors to make up the
wide gap between our expenses and income from registrations. During this
coming year, however, we must develop new sources of support or seek an
institutional affiliation that will ensure the future of the GDC open
registry. Without new sources of donor support and significantly increased
registrations GDC may be forced to suspend the registry service.
GDC will continue to
register dogs in existing registries at least during the next 12 months,
but will limit the number of new registries it develops. Our major effort
now has to be a call to action. If the AKC had established an open
registry ten years ago, and used their position as leaders of the purebred
dog fancy to push the concept, we would already have seen major reductions
in the amount of genetic disease among our dogs. GDC is now looking to
join forces with those groups and individuals who think that the time has
come to use the tools we have in our hands to fight the genetic diseases
that are ruining our dogs.
If you have
questions about this new initiative at GDC, or would like to know how you
can help support a grassroots advocacy effort to promote the concept and
use of open registries to improve the quality of life of your dogs, please
contact George Packard, GDC Information Services (Ph. 603-456-2286 in NH;
email: georgepackard@conknet.com) or visit the GDC website.
Sincerely,
Paul W. Poulos, Jr. DVM, PhD
Executive Director, GDC
P.S. As a
cost-saving measure, we will restrict the number of mailed copies of the
Exchange, the GDC newsletter, and will publish it on our website. We
encourage you to print out copies for your friends. If you want to
continue to receive a free printed copy of The Exchange in the mail,
please make your request by phone, email or letter to GDC. |
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Frequently Asked Questions:
The Challenges Ahead
for GDC
May, 2001
For more information:
www.vetmed.ucdavis.edu/gdc/gdc.htm
GDC@sigmaxi.org
What's going on with GDC?
After a decade of running the only national/international all-breed
genetic disease open registry, GDC has become the registry of choice for
thousands of breeders throughout the purebred dog world. Unfortunately,
we are finding that volumes of registrations continue to be lower than
expected, in part because of resistance by a majority of breeders to
sharing information on affected or carrier dogs. Low numbers of
registrations decrease the usefulness of the registry to breeders, and
put heavy financial pressure on GDC.
In the light of this challenge, GDC is shifting focus this coming year
to exploring new and more effective ways to make an impact on the
widespread prevalence of canine genetic diseases. We need to reach a
significantly larger audience of breeders with information about using
the open registry and the need to know where the affecteds and carriers
are in a dog's family before making a breeding decision.
Is the GDC registry closing?
No, the GDC registry is not closing.
GDC will continue to register dogs in existing registries for at least
the coming year while we work to secure corporate sponsorship or other
funding. However, the number of new registries we add will probably be
very limited. If in the future GDC is forced to limit services, all the
existing information will continue to be available.
Is GDC in financial trouble?
Since it was created, GDC has needed to raise funds to cover a
significant portion of its operating costs. A small foundation has
provided the major portion of those funds, but will no longer be able
make large grants to GDC. GDC must find adequate funding through
foundation or corporate sponsorships, major donations, an institutional
affiliation or other sources during this next year.
What is GDC doing about these problems?
During the next year GDC will produce practical educational material on
how to control genetic diseases by making breeding decisions based on
knowing where the affected and carrier dogs are among a dog's close
relatives. Most breeders do not understand these methods, and therefore
do not understand the crucial importance of an open registry.
GDC will also form an all-breed advocacy group of breeders and others to
help aggressively promote the need for open sharing of health
information. And finally, GDC will do everything possible to find a new
source of funding so that it can continue operations.
What can I do to help GDC during this next year?
One of the most important things you can do is help us build a large
advocacy group from all breeds to demonstrate breeder and owner concern
about genetic disease and the demand for breeding methods using open
registries. Start a core group in your own breed club, and link it to
the GDC email group.
We are also looking for volunteers to help us on a number of projects.
Contact George Packard, GDC Information Services,
georgepackard@conknet.com
, for more information.
Why is the
usefulness of the GDC open registry dependent on registrations of
closely related dogs?
Breeders use the GDC registry to help reduce the prevalence of polygenic
or single recessive genetic diseases in their lines. To make smart
breeding decisions, they have to know where most of the affected and
carrier dogs are among a dog's close relatives (littermates,
half-siblings, offspring, parents, and parents' siblings). If many of
those close relatives aren't registered with GDC, breeders are missing
crucial information and have to try to track it down by word-of-mouth,
which is seldom reliable.
Why should I register my dog with GDC now?
The information on your dog's genetic screenings is extremely valuable
data that adds to the overall usefulness of the GDC open registry. With
each added dog, the registry becomes more valuable to breeders and to
researchers. The individual dog you register may be one of the keys to
the puzzle of genetic disease in your breed.
I just registered my dog with GDC, but if it s going to close, can I
get my money back?
When you registered your dog, you agreed to make the information
available as a permanent piece of the GDC registry. In doing so, you
joined thousands of other dog owners who are thinking not just of their
own dogs, but of the future of the breed. GDC does not refund
registration fees, except for the registration of an affected dog.
Can our breed club transfer our GDC data to another registry?
Each individual is welcome to use his or her data in any way desired.
Simply make the request to GDC for your data file.
If GDC closes next year, what will happen to the data and the x-rays?
The data base and all archived information will be maintained in
whatever way necessary to allow it to continue to be accessible to
breeders, researchers and all others who need to use it.
Whom should I
contact to get more information, find out what I can do to help, or
express a complaint or concern?
The GDC website will be expanding with the addition of lots more
information. (www.vetmed.ucdavis.edu/gdc/gdc.htm).To talk with GDC
directly, contact George Packard, GDC Information Services,
georgepackard@conknet.com, Tel/FAX 603-456-2286, or email GDC@sigmaxi.org
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GDC calls for widespread use of open registries to fight canine
genetic disease
DAVIS, CA — After
more than a decade of operating the only national/international
all-breed open registry for canine genetic disease, the Institute for
Genetic Disease Control (GDC) will shift its primary focus towards
advocacy for the widespread use of open registries throughout the
purebred dog world.
“Despite
repeated calls from the world’s top canine geneticists during the past
ten years for the use of complete and unrestricted open registries to
fight genetic disease, the AKC and the majority of the purebred fancy
have actively resisted adopting this proven tool,” said Dr. Paul W.
Poulos, Jr., executive director of GDC.
Based on
long-established principles of animal breeding, the open registry
method was first used in the purebred dog fancy in the 1980s in Sweden
with great success. An open registry collects results of all genetic
screening tests (both positive and negative) on individual dogs, and
makes those results available to the public. In less than ten years
Swedish breeders were able to achieve a significant reduction in hip
dysplasia using the open registry method.
For an open
registry to be useful, large numbers of related dogs (siblings,
offspring and close family members) must be registered so that
breeders can create valid genetic profiles of the dogs they are
interested in.
According to Dr.
Poulos, GDC has not been able to meet its expectations for useful
volumes of registered dogs in large part because of the reluctance of
the majority of the breeding community to release information about
any dogs who are affected with genetic disease.
“It is no
surprise that here in the US we have made almost no progress in
reducing the most serious diseases known or suspected to be genetic
such as hip dysplasia and cancer if we refuse to share information
about which dogs may be carrying the defective genes,” said Poulos.
“Whether it is ignorance or active opposition to the use of open
registries, the result is the same: breeders are dismayed with the
amount of genetic disease among their puppies and owners are
heartbroken with crippled, cancerous and otherwise affected dogs.”
In the coming
year GDC will focus on producing educational resources for
veterinarians and breeders and will take on a strong advocacy role for
breeding practices that can reduce the amount of genetic disease in
dogs. During this same time GDC expects to limit the number of new
disease registries it develops and to search for sources of funding to
strengthen its financial position. Because GDC is dependent on income
from registrations, the continuing low volumes have put the
organization under severe financial pressure.
“Our shift in
focus is driven by the realization that the best open registry in the
world won’t help if breeders won’t use it or don’t understand how to
use it in their day-to-day breeding decisions,” explained Poulos.
During the past
ten years GDC has worked with many breed groups to establish more than
two dozen specific genetic disease registries and now has a number of
new requests in progress. However, according to Dr. Poulos, getting a
significant number of breeders and owners to actually register their
dogs is an uphill battle. Without the registration of large numbers of
closely related dogs, the data in the open registry cannot be used
effectively by breeders to select against affected dogs for breeding
purposes.
As many
geneticists and writers have pointed out, a dog selected for breeding
from the OFA registry, for example, might have been cleared for good
hips but may still be a carrier for genes that produce dysplasia or
may have other genetic disease problems that are unreported. That same
dog may also have close relatives who are affected with one or more
genetic diseases but are not reported in the registry.
Despite
widespread resistance to the use of an open registry, a small but
growing number of progressive breeders and breed groups are adopting
the open registry concept and looking to GDC for answers.
"This past year
at GDC we have seen a sharp increase in requests from breeders for
help with breeding decisions," said Poulos. "These are responsible
people who are very concerned about the amount of genetic disease they
are seeing in their breeds. And they are distressed because they
simply are not getting the straight answers and practical information
they need from the AKC and other traditional sources. It is an ongoing
tragedy that the purebred dog fancy has for the most part ignored
proven breeding practices that can, in fact, reduce genetic disease in
a given breed line within several generations.”
In 1990 GDC
pioneered a system in the US modeled after the successful Swedish open
registry for registering and screening dogs for several of the most
widespread and serious genetic diseases. The premise was simple and
proven to work. When breeders have virtually complete information on
all the close relatives in a dog’s family, they can assess which dogs
are carriers for disease genes and make smart breeding decisions based
on that knowledge. The open registry system is effective for
controlling both single gene diseases like PRA (blindness) or
complicated, multiple gene diseases like hip dysplasia.
Dr. Poulos noted
that the current excitement in the purebred fancy about the potential
for genetic testing via DNA has all but eclipsed interest in the use
of other methods to control genetic disease. Unfortunately, the
practical help that might be provided by this type of genetic testing
is likely to be many years away, and developing tests for even single
genes is proving to be very difficult and costly. No tests have been
developed for multiple (polygenic) gene diseases.
For example, the
recent discovery of a much smaller number of genes in the human genome
than was estimated implies that fewer genes interact in much more
complicated ways than scientists expected. Many of the most serious
and prevalent genetic diseases are polygenic, and most experts agree
that gene tests for these diseases will be very difficult to develop.
For these polygenic diseases like hip dysplasia and cancer, genetic
pedigree analysis of open registry data rather than gene tests may be
the only practical way for breeders to make any headway for years to
come.
“GDC will
continue to register dogs in existing registries over the next year,”
said Poulos. “But our major effort now has to be a call to action. If
the AKC had established an open registry ten years ago, and used their
position as leaders of the purebred dog fancy to push the concept, we
would already have seen major reductions in the amount of genetic
disease among our dogs. GDC is now looking to join forces with those
groups and individuals who think that the time has come to use the
tools we have in our hands to fight the genetic diseases that are
ruining our dogs."
4/01 END
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