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By Polly
Date 19.06.02 14:06 UTC

Last night at eye testing, I got talking to a couple of ladies who own a retriever breed. They were considering getting their dogs tested for the PRA gene, however they were put off by the cost which is £185 per dog.
Why does it cost £185???
It costs that much because a single american company have patented that gene sequence, in dogs, which means no further research can be done on it anywhere else in the world. In effect they own this piece of genetic material, and no one can do anything with it, without their agreement.
Now being an awkward soul, (they haven't patented awkward yet have they?), I asked the ladies how they intend to breed puppies. Surely if the company owns that gene sequence, if they breed a litter, that sequence will be in every puppy born, because it is an eye structure gene. So will the ladies then have to pay royalties for each puppy, to this company, because each puppy was born with an eye?
Will we in the future have to pay a company royalties for a baby's hair colour? Eye colour? Fingers and toes????
I think DNA testing will be a move forward, but do think that it will limit research, if companies are allowed to continue to own gene sequences.
There will be the inevitable bright spark who realises the company revenue is going down as nobody is paying this money for testing, so will say, "Ah but we own the sequence, therefore no breeder will breed a litter without us receiving a royalty".
What do you think? Is it worth the £185 per dog for the test? If it ever came to it, would you be prepared to pay royalties for a litter to the various companies who will own the different bits of canine gene sequences? Breeding could soon turn out to be very expensive!

I raised this very thing in my breed notes in dog World recently. How can health benefiting discoveries be patented, it is morally wrong!
Our Animal Health Trust I beleive is in dispute with some American Company over DNA testing for Von Willebrands disease.
I would have the test done if it were available, as I do the Hip Scoring at similar cost, though of course it is the Puppy buyers that will have to absorb all the extra costs for each disease or condition. I am sure many will take the cheaper option of buying from untested parents.
By Polly
Date 19.06.02 15:27 UTC

I agree it is morally wrong, "Man playing God" again but in the name of greed. However as I say, where there is a patent, there are royalties to contend with! Imagine the law suits, if you had a baby and only applied to pay royalties on it being blonde, but it turned out a brunette! The brunette gene squence holders would be after you, for infringing their rights.
Could puppy buyers afford a puppy, whose parents, would have to be tested for their DNA, and then have pay royalties on? I doubt it.
On the serious side, I am not impressed with this "owning of gene sequences", it stops important research into disease prevention, it is motivated by greed, and can have many more effects on our lives and on our animals lives than we can ever imagine yet! I think this research is important but it should NOT be allowed to be "owned" by any one individual or company or government, or groups of the afore mentioned.
By John
Date 19.06.02 16:47 UTC
I understand that a firm in America has even patented parts of the human genome! I thought my genes belonged to me!!! I know the argument, "I've paid out the do the research therefore the results of the research are mine!" but this is crazy.
John
Hi Polly, I have been aware of this for a while now & I also think it is WRONG. I thought it was just Labrador DNA that has been patented & research was continuing in other breeds, anyway, research for the gene has stopped at the Small Animal Hospital & everywhere else for that matter due to Optigen making it their own& that is so sad cos I do think it is the way forward.It`s OK to say the name as it is a well known fact what they have done. Below is "Bonnies Story" & it is a true factual acount of what happened to me a couple of yrs ago.
I finally achieved one of my dreams & acquired a beautiful, well bred
healthy 3mth. old labrador puppy, from a reputable breeder. It was Jan `95.
Later in the year, after much persuasion, she went to her first show & came
home home with RBP in show. Her second show saw the same ,RS.B.P in show, as
did her third, RS,B JUN. in show.Life with Bonnie was great,doing well in
shows, several CC`s, RCCs &R.CACIBS, it was time to mate her
Spring`97 she had her litter & they were beautiful, just like thier mum, &
i kept 2 of her daughters.
Summer is long & hot here in Spain & the coolest place to be in the
afternoon is indoors. That was when I first noticed the unusual greeny blue
colour in Bonnies normally brown eyes. It could only be seen fleetingly &
occasionally & after several months, off we went to the vet.He didn`t find
anything wrong with her eyes & our happy life continued.
1998 found me showing Bonnie & her pups with everything going well, except I
was now noticing the unusual colouring in her eyes in the night time. I was
also begining to hear of something called P.R.A. After reading everything
I could get my hands on about it (which wasn`t much), I talked to my vet
about bringing an opthalmologist over to have her examined. At that time,as
far as I knew, there were not any specialist`s in Spain. This was not going
to be easy, but my vet started to make enquiriesin the U.K.
At Crufts `99 I decided to mention, to vet David Morgan from the IAM`s
company, the difficulty I was having trying to find a specialist to come
over who wouldn`t charge the earth(as I was having to carry the cost
myself). He took my phone number & promised to see what he could do.Afew
days after returning home, David rang with Dr Kieth Barnetts number. Even
though the only symptom Bonnie showed was the ocassional unusual colouring
in her eyes, the feeling that something was not right kept niggling away at
me.
I rang Dr Barnett immediately & was over the moon when he agreed to come
over & examine my dogs for a very fair price. A very busy summer ensued,
with me cajoling & organising people to have thier dogs tested. It was
arranged for Keith to come out in the Sept. My vet gave us the use of his
clinic. I was so pleased. But August saw Bonnie unable to retrieve her ball
or her frisbee as well as she used to(only in the evenings). 3 weeks before
Dr Barnett was due, Bonnie was playing in the swimming pool and missed the
edge, caught her mouth & lost 2 teeth. She wasn`t looking I said to myself.
Deep down I was very worried. Ten days later, showing again & Bonnie takes
R.CC. Her daughter, El Chaparral Oakwood Sweet Pea Michelle takes her 2nd
Gibraltar CC, becomes a Gibraltan CH, & wins group 8. Highest of highs.
19 /9/99 B onnie is diagnosed G.P.R.A.
Summer 2000 finds Bonnie adjusting to her gradual loss of sight & having to
take life at a slower pace because of it. Dr. Barnett was here again in
Sept. & confirmed what I already knew. That it has progressed as expected.
After hearing much about the D.N.A. testing that is available for this
disease, I decided to have Bonnie & her daughter Sweet Pea tested. Common
sense tells you its always best to have a second opinion.
The results of the D.N.A. test by Health Gene Corp. are as follows:
Bonnie:- Test C104 canine P.R.A. genotype 1,1
Sweet Pea:- Test C104 canine P.R.A. genoytpe 1,2
This test was done to reassure myself that there was nothing else I could do
for my Bonnie, as I know she has g.p.r.a. & is going blind.
How can this D.N.A. test be so out of line with Dr Barnetts diagnosis & my
own personal observations.
Christine2

Christine what do the DNA results mean, and how are they in disagreement with Keith Barnett?
Hi Brainless,sorry it`s not very clear but I wrote it a couple of yrs ago & it should have the certificate with it that explains the results.
Pattern 1-1 = Clear Dog not affected & not a carrier.
Pattern 1-2 = Possible Carrier.
Pattern 1-3 = Affected.
There is absolutely no doubt that my dog has PRA. Healthgene tested my dogs blood & sent me back a clear certificate which states that, according to their test, she is clear & her progeny are possible carriers.
She is affected & her progeny are definite carriers & Dr Barnett took this up with them
A while after this happened & I published the results Healthgene stopped doing the test, its obvious they have not got the test right. Labs are a very popular breed & as far I as am concerned the firm thought they could make a bundle of money by offering this test & once again we the owners are taken to the cleaners!
Now then, Optigen say there are probably 2 types of PRA but their test only picks up 1 kind, what good is that to us? And by patenting the test worlwide & stopping other research to find the gene continue, how can that help the dogs,or us? The whole thing stinks. Getting carried away here, but I hope that explains it better.
Christine2

Christine!
Have you written to the Canine weekly papers over here. I really think you ought, maybe if enough people knew of this pressure could be brought against this sort of thing! Now that is something that the KC should take up with the Animal Health Trust and fight!
Hi Brainless, yes I was asked to write the story & what I have put on here was published in a couple of labrador year books but I lost my internet connection.Then I had probs with vaccines last yr & it was when I saw Pollys post that I thought right, lets get this out now! To be honest tho I thought people knew about it. The only thing that could be done now is to challenge Optigen in the courts & who is going to put that kind of money up? The big boys know that they can use delaying tactics to keep it going for yrs,they don`t care as they can afford it and thats how they get away with things. I can tell as many people as possible what has happened in the hope that when enough people start questioning things the big boys will finally listen. You see they cannot stop me from telling the things that have happened to my dogs because it is the truth even tho they don`t like it & that gives me great satisfaction!!!!LOL
Now you have put that idea in my head maybe I will write something & see if they are interested do you think they would be?
Christine2

You certainly can write it up and send it in to the letters page of both papers. It is certainly something to be given attention. You could also write in to A Vets View in Dog World for his comment, email: stevedean@talk21.com. Letters I imagine should go to editorial@dogworld.co.uk. I don't know the addy for Our Dogs, anyone?
By Polly
Date 20.06.02 18:18 UTC

Hi,
I have just read your story, would you like a journalists email address? Or I could ask him to email you if you like. I think this needs more publicity.
I am just amazed some people can legally patent what is a naturally occuring gene sequence, I think it is wrong and we should all be concerned about it, before we find ourselves having to pay silly money to know the health/coat colour/number of toes we can expect before breeding!
I spoke to a friend of mine who was at the seminar where Jean Dodds was speaker, my friend was told Jean Dodds husband is pro the gene patenting. At the seminar, someone got up and said they thought it wrong for research to be stopped because of it. Jean Dodds apparently said she was going to take this persons point of view back to her husband, lets hope she did!
Hi Polly yes I would, if you think he would be interested. The mind boggles doesn`t it, that they can do this and effectively stop all other researches looking for this particular gene. Well they haven`t stopped any other research ,but if any body else found the gene they can`t use the test for it because of the patent so nobody else will be bothered to look for it! Of course it is wrong. That was me who questioned Dr G Samson at the seminar and after he finished replying to my questions (didn`t give me a direct answer tho) Dr Dodds took the mike from him and said she had some things to add. She also said, she didn`t hold her husbands views & was working on him LOL.
What also bothers me a great deal is the test was completely wrong in my case and we can only draw our own conclusions that Healthgene no longer offer the PRA dna test for Labradors, but how many times has it been wrong that we don`t know about? And were any diagnosed affected? It might interest you to know that the testing Healthgene did was only for dogs outside USA!! They would not accept dogs from USA, this was stated on the form they had on their web site.
I have heard that Optigen will license the test out when they have perfected it but I can`t see it being in the price range were many people would be able to afford it. But they have the monopoly on it & that is not good for us.
Christine2
By Schip
Date 21.06.02 06:22 UTC
I have been following this with some interest as I am at present collecting samples for VetGen to finalise the cream gene for schipperkes.
If Optigen are the only people who have patented the genes then how come Vetgen is offering and developing tests for various Canine, Equine, Avian and Feline disorders, coat colours etc?
Hi Schip, it is the PRA gene in Labradors we are talking about, thats the one they have patented. The gene for colours is a different on. I think, don`t know to much about that one.
Christine2
By Schip
Date 21.06.02 18:24 UTC
I've just checked VetGen's website and they are offering DNA tests for these diseases in various breeds as well as coat colour and DNA profiling with a storage service etc etc.
vWD
PFK
PK
PRA (IRISH SETTERS)
CT
RD
There prices range from $35 - $170 which for us in the UK is a good deal lol. I must admit I'm looking forward to our colour tests being available as all my dogs at present are cream carriers but the next generation won't be so easy will need to test to find the carriers to continue my breeding plan.
By Polly
Date 23.06.02 19:53 UTC

Christine,
I couldn't send you the journalists email as your email is hidden. Do you still want it?
Polly
Sorry Polly yes of course I do, I have been meaning to reply to you re your other posts as well. I will put it back on now & post a message tomorrow.
Christine2
By Salem
Date 21.06.02 09:17 UTC
Hi - I don't know if this helps at all but I have just received my testing kits for Dobe vWD, Requested from an American company called GENESEARCH. On the price list the genetic test for PRA is $42.50 per dog. The kits are sent to you, you scrape the inside of the dogs mouth & return it to them for the results. It takes about 2-3 weeks an would appear to be much cheaper than the price your friends were quoted.Was their price through a vet? It might be worth a look at their web site, then you could perhaps find out more about them and the tests that they do.
Hope it helps :)
By Polly
Date 21.06.02 23:02 UTC

Hi
The price was taken from the web site, but then it requires a blood test being performed. As it is not possible for anyone other than a vet to do this, that pushes up the price. I asked if the ladies present had thought about getting the cells from inside the mouth as you suggest, since that is what we do for coat colour DNA tests. I was told that Optigen will not use this method, only a blood sample will do for them to test for the PRA condition.
I do wonder as well, if the company is eventually going to licence others to use their test and find a result, will this mean an added layer of people to be paid? Will it not push up the price? Lets face it, what the farmer gets for a pint of milk is vastly different from the price you pay in the supermarket!
However much it costs, I still think it is wrong for any one company, person, or government to own a patent on a gene. We should be thinking about this now, before it all gets out of hand, (I am sure we can all think of examples of rushed and poorly worded laws or agreements?).
By Salem
Date 22.06.02 09:55 UTC
Hi Polly
Does this mean then that PRA can only be tested with a blood sample? I thought that DNA could be collected from any cells from the body including inside the mouth.I would still be inclined to contact Genesearch and VetGen just to see if they can do it. It would definatly appear to be a cheaper option for the same outcome! It would seem that Optigen are a bit greedy and need some compition!!:D

This is exactly right, but with patenting how can there be competition?
I can tell you that both Optigen & Healthgene when doing the test for the PRA gene in Labs wanted only blood to test them. I can`t remember where or which one gave the expanation for this as "swabs can get contaminated?" Also something to do with actually identifying the gene as they use a "marker", I can`t remember now but its along those lines.
VetGen were asking for blood to help with their research a while ago & I emailed them telling them about Bonnie& her progeny. They replied saying they were very interested & what they wanted & how I could get it to them, so I said well first of all I would like to know a bit about your company! I sent off another email mentioning some of the issues that have been brought up here & what they would eventually do when the gene is found. Guess what... they never replied to me! By the way it was a very nice email I sent, not nasty are shouting or anything like that. Can`t want the blood that much then can they if they don`t want to answer some questions. I`d like to know if they have something to hide. Anyway, why were they interested when Optigen holds the patent? Like I said before the whole thing stinks.
Christine2
By Schip
Date 22.06.02 14:18 UTC
Christine2
I would be interested to know who you were corresponding with at VetGen as the lady I email is very helpful and nice.
If your correspondence was recent I do know that she's had problems with the PC so isn't getting all her emails and has a large backlog to catch up on, she'll generally answer my questions within 1/2 hour if I have written during her office hours, just can't remember the time difference between here and there lol.
I will pass your comments on to her I am sure she could do something to answer your questions.
Hi Schip, it would have been about Feb/March this year. The reply from Vetgen came from a woman who was very nice saying they were interested to use the DNA from my dog for research & where to send the kit to. Unfortunately I had everything uninstalled from my pc last week so until I put all the saved things back I can`t tell you her name. As soon as I can I will let you know. But it was when I replied asking questions about them that they just never bothered replying. Anyway I don`t think they would have had such an offer from anybody else in Spain so they should remember.
Christine2
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