Bone to pick with OFA

While I appreciate the work OFA is doing I was shocked by what I got in the mail yesterday.

In February or March we got the Fanconi DNA test results back from OFA and it was the best possible news–she tested Probable Clear/Normal. We breathed a huge sigh of relief that lasted for days.

Yesterday I got an unexpected envelope from OFA telling me that due to a processing error they were now sending me new test results that now showed our Ella was a probable carrier of Fanconi. My jaw dropped.

Has anybody else ever had this happen! It seems relatively unforgivable. FOr one thing, there is a chance we could have bred Ella in the last few months and how would we all feel if that had happened OFA? In this case, Ella has been spayed so that was not an issue.

My main question, since Ella is spayed, is there any difference in the results of probable clear and probable carrier in terms of Ella's chance of developing Fanconi herself. I know there is a huge difference in the meaning of those results if she was being bred. But the way I read it, the chance of her developing Fanconi is "unlikely" in either case. Is that really true? Did our Ella's chance of developing Fanconi just go up yesterday?

If I am the only one this has happened to, I can deal with it. But if they regularly send off:mad: test results and then rescind them a few months later, they need to re-evaluate their process.

You are not the only person. Apparently, either during a QC check or because of an owner reported inconsistency, the lab was made aware that one of their batches may have had an error. Several people have been effected by this error.

Mistakes happen and it is part of lab work. It is bad that it took this many months for them to correct the problem.

It is very important that anyone who gets an inconsistent result report it IMMEDIATELY because your inconsistent result may effect several other people.

As for Clear vs. Carrier in a spayed pet, there is no real difference. Neither should get Fanconi but it is still probably a good idea to strip test occassionally.

@bcraig:

While I appreciate the work OFA is doing I was shocked by what I got in the mail yesterday.

In February or March we got the Fanconi DNA test results back from OFA and it was the best possible news–she tested Probable Clear/Normal. We breathed a huge sigh of relief that lasted for days.

Yesterday I got an unexpected envelope from OFA telling me that due to a processing error they were now sending me new test results that now showed our Ella was a probable carrier of Fanconi. My jaw dropped.

Has anybody else ever had this happen! It seems relatively unforgivable. FOr one thing, there is a chance we could have bred Ella in the last few months and how would we all feel if that had happened OFA? In this case, Ella has been spayed so that was not an issue.

My main question, since Ella is spayed, is there any difference in the results of probable clear and probable carrier in terms of Ella's chance of developing Fanconi herself. I know there is a huge difference in the meaning of those results if she was being bred. But the way I read it, the chance of her developing Fanconi is "unlikely" in either case. Is that really true? Did our Ella's chance of developing Fanconi just go up yesterday?

If I am the only one this has happened to, I can deal with it. But if they regularly send off:mad: test results and then rescind them a few months later, they need to re-evaluate their process.

Please NOTE: OFA only lists the results, they are NOT the LAB that does the test, that is the U of Mo, so they are only the messenger with DNA Fanconi testing

Human Error happens, there is someone else on this Forum that must have had their dog test about the same time and was also notified of incorrect results. Be glad that they found an error and corrected it. I do not believe is a reqular occurance. Humans make errors, labs make errors… I have only heard of one other time back in 07 that there was a testing problem with a batch of samples.

As far as Fanconi, Carriers are just that, a Carrier. Carriers carry the gene, but only one copy of it, so therefore they should never develop Fanconi

Thanks for a clearer explanation of the results, which makes me feel better for our Ella.

I understand that errors happen–it is unavoidable and part of scientific inquiry. But at what point are the test results really final? I guess they never are. I wish I knew that when we celebrated the results months ago. Maybe they should explain that a little more clearly in the literature. Maybe there was disclaimer but I did not see it.

Without sounding too cynical, how do I know I am not going to get yet another letter from them in 6 months telling me the results have changed again. I am being serious. I have little confidence at this point.

@bcraig:

Thanks for a clearer explanation of the results, which makes me feel better for our Ella.

I understand that errors happen–it is unavoidable and part of scientific inquiry. But at what point are the test results really final? I guess they never are. I wish I knew that when we celebrated the results months ago. Maybe they should explain that a little more clearly in the literature. Maybe there was disclaimer but I did not see it.

Without sounding too cynical, how do I know I am not going to get yet another letter from them in 6 months telling me the results have changed again. I am being serious. I have little confidence at this point.

And in the world there are many people that have been told they have some serious illness only to find out months later they did not, it was a lab error. Or told they "don't" have a serious illness and then told they do, it was a lab error. Happens in all walks of life human and animal alike.

We would all like to be perfect, but in reality not going to happen

@lvoss:

As for Clear vs. Carrier in a spayed pet, there is no real difference. Neither should get Fanconi but it is still probably a good idea to strip test occassionally.

+1 on this. Do you know the test results of both parents? If one parent is a clear, than I probably wouldn't bother strip testing. If both were carriers or you don't know the parents results, I would occasionally strip test.

It does anger to get the wrong results on medical tests, but perhaps in time you can concentrate on the fact that your Ella is probably fine. Does anyone know if the university actually 'retested' the samples? Is this possible? Or was it so evident that it was a clerical error? I wonder if the university might offer a free additional test to those affected. It might provide further peace of mind.

@Kipawa:

It does anger to get the wrong results on medical tests, but perhaps in time you can concentrate on the fact that your Ella is probably fine. Does anyone know if the university actually 'retested' the samples? Is this possible? Or was it so evident that it was a clerical error? I wonder if the university might offer a free additional test to those affected. It might provide further peace of mind.

I agree…I think if I were in this situation I would request that the lab run another test on my dog for free, to confirm which test result was the correct one. The likelyhood of an error being made twice on the same dog are VERY small...so I would feel confident with this solution.

I've had an issue with a test result, but it was between carrier and affected. I just have to worry about Medjai getting Fanconi and watch for it with an open mind to the possibilities.

I am glad your girl will probably NOT get fanconi

A german breeder just got such a letter yesterday, too.
The results of the 3 girls of her last litter changed.
The Clear ones are Carriers now and the Carrier Clear.
One or two will probably be bred at one day, so they will have to do the test again in a few month…

If you make the OFA aware of the change in results, they will ask you for a new sample to run the test on and will do it again, probably free of charge.

Pip came back Ind from clear parents, I was never happy about the result and plan to re-do it at sometime.

Someone over here had her dog re-tested as it came back carrier, the parents were both clear, retest came back clear.

@moetmum:

Pip came back Ind from clear parents, I was never happy about the result and plan to re-do it at sometime.

Someone over here had her dog re-tested as it came back carrier, the parents were both clear, retest came back clear.

I am not sure why you would not be happy with these results.
It is your dogs DNA that shows it is Indeterminate.
It has NOTHING to do with the test.
The DNA is not showing all 'clear' genes.
If both parents tested as clear, you can figure when the direct test comes out, yours may just do that also…
but this is not a direct test...
and DNA can be funky and not show that they are looking for in this "mass" of genes.

I see so many folks complaining....
Sorry, but I think those complaining need to take a closer look.
I have seen Fanconi Syndrome for YEARS.
I never ever thought there would be a test in my lifetime.
And I am only 42 years of age.
This test is beyond my wildest dreams.
We are LUCKY it is here today.
Rejoice in the fact that you do NOT need to live with Fanconi Syndrome any more.
Though, I am seeing more foreign [non-USA] born litters that are producing affecteds…..
which is incredibly dismaying.
There is NO reason to breed a litter without testing the parents first.

Having lived with Fanconi Syndrome and produced plenty of it,
I know the ramifications and don't dare put any prospective puppy owners in the position of having a pup that could eventually come down with FS. It just isn't worth it.. not at any cost.

@khanis:

I am not sure why you would not be happy with these results.
It is your dogs DNA that shows it is Indeterminate.
It has NOTHING to do with the test.
The DNA is not showing all 'clear' genes.
If both parents tested as clear, you can figure when the direct test comes out, yours may just do that also…
but this is not a direct test...
and DNA can be funky and not show that they are looking for in this "mass" of genes.

The person didn't say INDETERMINATE in the section you quoted they said CARRIER and that is an issue. Two CLEARS should NOT produce a CARRIER. If that is a "real" result then the lab needs to take a serious look at the markers they are using. If it is an "error" result then the lab needs to do some serious QC to make sure that their clients are getting correct results.

DNA follows some very specific rules. Even with mutation there is expected outcomes and markers are chosen with this in mind.

Errors happen in all labs, it is how they are handled that really separates labs. It is good that they caught the mistake but if the letter explaining what happened did not answer your questions and did not include a contact number so you could discuss your specific situation then I can fully understand everyone's frustration. If the only reason people are upset is because an error happened then everyone needs to remember labs are run by humans and humans make mistakes.

That is an issue ivoss. I had two clears produce an affected. I had the test redone and it came back carrier. I know I had it done a third time, and I believe it was carrier that time as well. I had the AKC do a DNA parentage and the mother on paper was not really Medjai's mother. His real mother was also clear though.

There is one other issue with the DNA tests and that is that they rely on the owners to honestly sample the correct dogs. This would seem a no brainer, that no one would want to willfully lie when this test can prevent disease but experience suggests that is not always the case.

I guess I am glad I started this thread, as I had never heard of any of these issues with the test previously. I agree that the fact that we have the test at all is a blessing for anybody that breeds Basenjis. So it is hard to complain about any of the details. We are not breeders and just wanted to know if our Ella would develop Fanconi. At this point, even with the test, I think the answer is not certain.

I will vent just a tiny bit of frustration one more time to all those who have reasonably stated that "tests are run by humans and humans make mistakes."

We all make mistakes but the difference is how we handle those mistakes. They could have been a little more understanding. I was quite put off by the form letter that i got, which was a total of 2 sentences and made no reference to why the original test results were thrown out or whether there would be any reason to re-test again. There was no offer to engage me to contact them for more information if I wanted it. They did not even include a simple guide to the test results which came with the original results, so that I had to dig through my old paperwork to even figure out what the new results mean. I know that it is professional scientific organization, but just a little more information and compassion along with the new results would have gone a long way, I think. It is probably too much to ask.

@bcraig:

We all make mistakes but the difference is how we handle those mistakes. They could have been a little more understanding. I was quite put off by the form letter that i got, which was a total of 2 sentences and made no reference to why the original test results were thrown out or whether there would be any reason to re-test again. There was no offer to engage me to contact them for more information if I wanted it. They did not even include a simple guide to the test results which came with the original results, so that I had to dig through my old paperwork to even figure out what the new results mean. I know that it is professional scientific organization, but just a little more information and compassion along with the new results would have gone a long way, I think. It is probably too much to ask.

These are valid reasons for being upset. You paid good money for the test and should have an expectation that you would be treated professionally by the lab. They should be willing to talk to their clients when an issue like this arises, it is part of the job and should not be too much to ask.

However, remember you did NOT get a letter from the LAB, right, it came from OFA, correct?

While I agree it should have been the lab that contacted you and advise of the error, I would not expect OFA to be the one providing the explanation, OFA is just the source were the results are listed.

Just want to make it clear that we are talking about how the Lab should have handled errors

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