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Preliminary DNA test for Early Adult Onset Deafness now available!

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There are a number of recent updates to the Frequently Asked Questions page at projectDOG.

 

Haystack, there will be an update shortly about the lab and research team that should answer your questions.

 

I keep looking on the website for information about about what Project Dog is, but I can't find it. Can you tell me where it is exactly? I can't find anything about anyone connected with it. Are you part of it?

 

Doesn't anybody but me think this is strange? A website with no people and no credentials and no address asking people to send them $145 for a kit for a test? Who are the bosses or employees of Project Dog? What are their credentials and job histories? If it's too big of a company to list them all, they could at least put officers or department heads. What kind of track record do they have? Do they offer any other tests for sale, or is this the only one, and it will only go until September? If they have a lab, does it have an address? Why isn't there anything like this on their website?

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There are several people on these Boards who are thanked on the projectDOG home page for their collaboration and support.

 

Hopefully one or more of them would be willing to shed some light on those questions. . . .

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^^ Very interesting.

 

If it is indeed a research test, it seems to me to be pretty expensive for the participants of the research. :unsure:

 

I also find it interesting that none of the people on these Boards who are named on the ProjectDOG home page have stepped forward to answer the very reasonable questions people have posed about the project and its administrators.

 

I'm not suggesting that there's anything wrong with the project; I don't know enough about it to make that determination, and the research is certainly worthwhile. I just don't understand the lack of transparency, to use a current buzz-phrase.

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Having read the ABCA statement, the ProjectDOG website and the comments here on these Boards:

 

FWIW, I also find the lack of information with regard to stakeholders and research staff (including credentials) on the ProjectDOG website to be troubling. I agree with Gentle Lake that the lake of transparency should be remediated.

 

On the other hand, I am also troubled by the timing of the ABCA statement. The statement was not issued until a few weeks after the ProjectDOG initiative went public. I know that the excuse was to gather information and discuss, but at the very least, they should have publicly stated that a decision was in progress. It would have given owners the opportunity to wait for the ABCA staetment in order to have more information for decision-making. Apparently only the people who are 'in' with the ABCA knew what was in the pipeline - or maybe I was one of the few that was kept in the dark about the impending policy statement?

 

Thirdly, for me, I find the discussion to be solely about EAOD for the test offered by ProjectDOG. But no one seems to mention the other 4 tests included in the results. ????? When I read their website, my understanding is that in addition to testing for EAOD, samples will also be tested for mdr1, CEA, TNA and IGS. And the results will be sent to the submitting owners. From my point of view, to get those results is worth more than the money being charged - the EAOD 'result' is extra gravy. I checked the cost of those 4 tests online at 2 different organizations, and the package offered by ProjectDOG is a significant savings over the cost of those 4 tests individually or batched together. (For example, through animalgenetics.com, the cost of the 4 tests individually would total $220, but I think that they might give you a 20% discount for ordering more than one test per sample - which would reduce the cost to $176.)

 

(And yes, I understand that some people may not want all 4 tests, but the value is there - unless I am mis-understanding the offer.)

 

For me, I am approaching it as $$ spent to obtain the results for the mdr1, CEA, TNS and IGS genes, and then a crowdfunding effort for the EAOD gene. I already know that I will benefit more from this crowdfunding project than I have from another crowdfunding project to which I contributed. Even if I did plan to breed, I wouldn't be putting a lot on emphasis on the EAOD results until the research was peer-reviewed.

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Seems to me that ABCA's statement was based on the request of the membership so naturally would be after the fact.

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I was just chatting with someone this morning who ordered 2 tests, I have 1 ordered, there is the question about how accurate those other tests will be and would they be accepted by others, example, ISDS only accepts Optigens CEA results. Would ABCA accept the results to denote them on the papers in the case of CEA?

 

I would imagine they will be perfectly fine, but it is a question that comes up but seems that many are not asking or afraid to ask.

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I was just chatting with someone this morning who ordered 2 tests, I have 1 ordered, there is the question about how accurate those other tests will be and would they be accepted by others, example, ISDS only accepts Optigens CEA results. Would ABCA accept the results to denote them on the papers in the case of CEA?

 

I would imagine they will be perfectly fine, but it is a question that comes up but seems that many are not asking or afraid to ask.

I would imagine that the tests should be accurate too. These tests are usually simple enough to run - even 20 years ago I knew of high school students running similar tests. Nowadays, a lot of the genetic testing is robotic.

 

I think that testing labs could offer data that validates their results for the tests without compromising protected information - i.e. testing protocol, genetic markers used, controls included, # of tests run vs. # of 'failed tests' (unclear results, false positives, false negatives, other anamolies) and how they were resolved.

 

I find that the fact that ISDS only accepts Optigen results to be interesting. Is that because Optigen was the only company that 'applied' to be an approved vendor? or was there a system to vet other companies that offer genetic testing and they were determined to be less accurate? Or another reason? I find that in this day and age, and with several companies offering genetic testing, limitation to one company is suspect IMHO (kickbacks?).

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I agree with Jovi. I need those other DNA tests on all but one of my dogs anyway, and I really want the EOD results for that last dog. So, from my point of view, I will get value for my money even if the EOD results are not perfect.

 

I am also happy to contribute some money towards what I feel is a very worthy cause. The preliminary EOD results will be a bonus for me. I won't use the results, and I hope others will not either, to cull dogs from the gene pool. That should not be done without a finalized test.

 

Is part of this secrecy related to protection of proprietary information? IOW, are they trying to prevent other labs from taking advantage of their findings and offering the EOD test?

 

To be quite honest, I have never paid to have any dogs analyzed by PawPrint. Some things they did worried me , so I have used UC Davis as an alternative lab for DNA results. I was surprised by how quickly the USBCHA got into bed with them.

 

Did the ABCA contribute money to Project Dog?

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To be quite honest, I have never paid to have any dogs analyzed by PawPrint. Some things they did worried me , so I have used UC Davis as an alternative lab for DNA results. I was surprised by how quickly the ABCA got into bed with them.

 

"got into bed with them"?? What the heck is that supposed to mean?

 

PawPrint came to the ABCA with a proposal for a "partnership." (Seems to be the marketing buzzword for just about anything these days -- Clairol wants to partner with you to achieve glorious hair.) ABCA declined, because we felt it was inappropriate for the registry to "partner" with a commercial test vendor. I believe USBCHA did accept the partnership offer, whatever its significance might be. We do accept their CEA results, because the quality of their laboratory and personnel seems to be of high standard. If we were asked to accept CEA test results from projectDOG for pedigree notation we would need to find out what lab is doing their work and make a judgment accordingly.

 

Did the ABCA contribute money to Project Dog?

 

The ABCA has contributed money for research done by Mark and Alison, but not to the entity projectDOG.

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Sorry, went back to edit my post. You are correct that it was the USBCHA that they "partnered" with to offer a discount.

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The ABCA has contributed money for research done by Mark and Alison, but not to the entity projectDOG.

 

Was this before they were working with Project Dog?

 

I don't know how the laws work regarding ownership of research findings. Would the ABCA have any sort of claim on the info, and therefore the test method, if they contributed money to the study?

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On the other hand, I am also troubled by the timing of the ABCA statement. The statement was not issued until a few weeks after the ProjectDOG initiative went public. I know that the excuse was to gather information and discuss, but at the very least, they should have publicly stated that a decision was in progress. It would have given owners the opportunity to wait for the ABCA staetment in order to have more information for decision-making. Apparently only the people who are 'in' with the ABCA knew what was in the pipeline - or maybe I was one of the few that was kept in the dark about the impending policy statement?

 

"the excuse"?

 

ABCA found out that projectDOG was going to publicly offer this test for sale at exactly the same time that their website making the offer was published. We decided to issue a statement only as a result of members asking us to, and as result of statements being made on social media. Mike Neary posted here to let people know that ABCA and the foundation were deliberating on a statement. I don't think the length of time it took was unreasonable, or that we have made -- or needed to make -- an "excuse" for not doing it sooner. To the best of my knowledge, no one outside of the persons working on the statement or voting on the statement knew what was going to be in it. Some might have guessed, but I don't believe they knew.

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"the excuse"? <sigh>

 

ABCA found out that projectDOG was going to publicly offer this test for sale at exactly the same time that their website making the offer was published. We decided to issue a statement only as a result of members asking us to, and as result of statements being made on social media. Mike Neary posted here to let people know that ABCA and the foundation were deliberating on a statement. I don't think the length of time it took was unreasonable, or that we have made -- or needed to make -- an "excuse" for not doing it sooner. To the best of my knowledge, no one outside of the persons working on the statement or voting on the statement knew what was going to be in it. Some might have guessed, but I don't believe they knew.

Thanks for the clarification.

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I have been very disappointed at the aspersions towards ABCA and the volunteers there that I have seen expressed here and on Facebook. I am grateful to see clarification and sad that motives have been questioned.

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Interesting question wrt CEA. I will be testing several dogs with PD, I'll have to write ABCA I suppose see if they will accept the CEA results. I too find the timing a bit odd for the announcement...

 

Who is the alternative?

 

As for proprietary info I'd expect PD to hold all that, in a patent, after all they did the work!I've found it very informative and easy to contact them, email, with specific questions. Any way you look at it the test, discovery or not, is far less than any other lab is offering. I'll be testing several who need the CEA anyhow.

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Was this before they were working with Project Dog?

 

I don't know how the laws work regarding ownership of research findings. Would the ABCA have any sort of claim on the info, and therefore the test method, if they contributed money to the study?

 

I can't think of a legal theory under which we'd have a claim. We didn't specify that as a condition of giving the money.

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Interesting question wrt CEA. I will be testing several dogs with PD, I'll have to write ABCA I suppose see if they will accept the CEA results. I too find the timing a bit odd for the announcement...

 

Who is the alternative?

 

As for proprietary info I'd expect PD to hold all that, in a patent, after all they did the work!I've found it very informative and easy to contact them, email, with specific questions. Any way you look at it the test, discovery or not, is far less than any other lab is offering. I'll be testing several who need the CEA anyhow.

 

If there currently existed a better test for EAOD, you can be sure ABCA would be telling you about it. But I don't believe that "any test is better than none." It depends on the accuracy of the test. I'm sure you can see how bad things could result if you relied on a test as being perfectly predictive when it wasn't.

 

As a result of a Supreme Court case a few years ago, it's no longer possible to obtain or enforce a patent on genes or gene sequences that exist in nature. That's why you can now get CEA tests from many places, not just OptiGen or outfits that are licensed by OptiGen. So projectDOG would not be holding the results until they could get a patent. They might be unwilling to disclose their results for the exact opposite reason -- since they can no longer patent them, the only way to delay or prevent competitors from bringing out a test of their own would be by not disclosing their results -- keeping them as a trade secret. That does hinder any other researchers from building on their results.

 

It would be helpful for canine research if they shared their results -- the five variants -- and it would enable peer review and make it possible to see if their findings can be replicated. But there are ways to help others to evaluate the test short of disclosing their results. More important are details about the procedures they used to find them -- number of dogs tested, how tested, known or unknown hearing status of the dogs, how the data was analyzed, etc. Obviously it's a lot easier to find a perfect correlation based on 3 dogs tested than based on 3,000 dogs tested. (I'm certainly not saying they tested only 3 dogs -- I don't know how many they tested.) I don't believe they'd be giving up any trade secrets by sharing that information.

 

ETA: I want to emphasize that I'm not telling you not to buy the test! That is your decision to make, and I can well understand why you might want to go ahead and do it.

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If there currently existed a better test for EAOD, you can be sure ABCA would be telling you about it. But I don't believe that "any test is better than none." It depends on the accuracy of the test. I'm sure you can see how bad things could result if you relied on a test as being perfectly predictive when it wasn't.

True. However, look at how bad things can be and are with no knowledge.

 

Reading between the lines here....are you implying that PD has no credibility and the test is useless? Nothing is perfect and I don't recall them saying so yet, only that they need more DNA/funds to further the research. I'd rather some information than none. And if we do pool together to help it would help the breed as a whole. Unless PD is a fraud?

 

Maybe until it affects people personally one won't understand?

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True. However, look at how bad things can be and are with no knowledge.

 

Things are terrible now with no knowledge. I couldn't agree more. ABCA has been pushing in every way it's known how to drive this research forward. But if there isn't a definitive test yet, wishing it and needing it will not make it so.

 

 

Reading between the lines here....are you implying that PD has no credibility and the test is useless? Nothing is perfect and I don't recall them saying so yet, only that they need more DNA/funds to further the research. I'd rather some information than none. And if we do pool together to help it would help the breed as a whole. Unless PD is a fraud?

 

No, no, no! I am not implying that PD has no credibility and the test is useless! I'm saying just what the statement said: The test may or may not live up to the claims made for it. But the claims are big, and we have been unable to obtain enough information to have confidence that they're justified. Since ABCA is known to have been very supportive of Mark and Alison's research in the past, we felt we owed it to our members to give our take on it when we were asked.

 

I hope the test proves to be what we all have been hoping for, but speaking personally now, I wish it were not being sold as is. I wish samples were simply being collected for further research aimed at validating and improving it. I worry that if one or more results given to customers turns out to be wrong, then that will have the effect of discrediting research and testing in the eyes of many breeders, a lot of whom already have their doubts about whether tests are a good thing or not.

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If the ABCA does indeed manage to organize a genetic database as they hinted to in the past, I am holding cheek swab samples from a dog of mine who died a year ago. She produced EOD.

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On the other hand, I am also troubled by the timing of the ABCA statement. The statement was not issued until a few weeks after the ProjectDOG initiative went public. I know that the excuse was to gather information and discuss, but at the very least, they should have publicly stated that a decision was in progress. It would have given owners the opportunity to wait for the ABCA staetment in order to have more information for decision-making.

 

Not specifically in response to you, gcv, but I take issue in general with this trend: something has become a hot topic in social media, and then an entity or individual is maligned for "failing" to immediately respond to it, on public media.

 

It was generally known that ABCA was discussing where they stood on this.

 

ABCA committees are volunteer and it takes organization and time for everyone to weigh in and for a statement to be created and reviewed by all. This is not an "excuse," this is reality. They came forward with theirs in a timely fashion. There was not "secrecy" or lack of transparency. Their timeline simply was not aligned with that of Facebook, these boards, Sheepdog-L and other online bastions of opinion.

 

If someone made a testing or breeding decision based on lack of a statement from the ABCA, that would be on them for not waiting.

 

Again, this is not directed at the person whose post I quoted; I read a lot on Facebook along the lines of "why the secrecy" and what the ABCA "should" be doing. Public media and people reacting like they're on fire there is not what drives thoughtful decision making. At least it should not be.

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Thank you, Laura, for saying these things so well.

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It was generally known that ABCA was discussing where they stood on this.

No, it was not "generally known" - at least not to those of us "on the fringe".

 

Interestingly I had been hearing about ProjectDog's project several weeks before the official announcement was made.

 

I don't know what that says other than that information travels in strange and mysterious ways in the current state of technology.

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