The one that comes to mind - to the best of my knowledge - should not have had anything to do with the reliability of the results (it was done in 2009 - 2 years after the start of public testing in 2007 when most kinks should have long been worked out).
Of course being 2 years after public testing began, I can not think of any legitimate reason for the need for research nor the need to keep it private, but then I am oftentimes guilty of giving too much information vs not enough. š
I'll see if I can find the reference I am thinking of and if so, will ask - assuming I did not already. Will have to look.
Hi Linda -
Not sure exactly what kind of situation you're talking about - so will give a general summary.
Fanconi research is continuing and we are still using research samples, and gather new samples. Work is primarily to develop a direct test (the current test is a linkage marker test for multiple markers) but also to keep an eye on performance and accuracy of the current test.
So getting new research samples in 2009, 2010, and 2011 is expected and needed.
Research uses validated dogs that are anomalous and verified affected dogs, usually using new testing technologies. Goal is to develop a direct test and, in the interim, if needed, to improve the existing test.
OFA is not funding the research and is not doing the research testing, so they can't tell you anything. OFA handles payment, reporting, and publication of results for the production test.
Samples ordered for research are handled separately from OFA samples and are not paid for. They are often blood samples, in some cases fresh blood only, but not always.
If you pay OFA to have your dog tested and sign a release form, his results will go into OFA's open database. If a research sample is tested, it will not.
For research samples, most I know of were either for known affecteds, to be used to refine the test, or retests to verify a test was of the right dog, or tests of a cluster of relatives to verify parentage where a parent is deceased and DNA is not on file.
I can't offhand think of cases where the production test would be done for research for anything except retesting a dog with an anomalous result. In that case, if the result was different, it would be corrected; if not, nothing would happen on the OFA side.
For Fanconi, in general, at this point, if Gary is testing a sample or samples for research, he is either using testing methodologies that are not in production (mostly working on getting a direct test) such as whole genome mapping or improved SNP chips, or he is verifying parentage, or he is retesting an anomalous sample to make sure the right dog was tested.
A fair bit of that is in the Health Committee report which is on the front page of www.basenji.org, click on annual meeting powerpoint and scroll down to the HC part.
I don't know if this answers your questions or not because I don't really have enough info to figure out the specific situation.
I can pretty much tell you, if it's a research sample, OFA probably knows absolutely nothing about it. They are not part of the research process right now for Fanconi. They are in the pay/test/report process for the validated Fanconi test already in production.
FYI, the Health Committee email list is open to any BCOA member and you can ask questions there at any time.
Lisa
