I’ve been asked a few times where we are at in the genetic testing area. My last update on this topic was in January when we had found out that not only had the testing not been started, but Tufts hadn’t even sent our samples over to Boston Children’s. Since the initial delay I decided to stay more informed on the progress or (hopefully not) lack thereof.
February 26th – We are making very slow progress—after several more “back and forths” with the lawyers at both institutions, we have a final contract agreement. Pending two more signatures, Tufts should be able to release the samples to us. I just emailed the pathologist to make sure they are ready to send as soon as the ink dries. I honestly have never had this much back and forth for a sample transfer before.
March 1st – After I questioned why the release I signed in the fall was not sufficient:
You are absolutely correct—usually the consent form you signed in September is enough to transfer the samples. Apparently Tufts has a new policy that if samples are being transferred for research, a “material transfer agreement” (MTA) must be in place which basically states the circumstances for which the sample can be used upon release.
I find these are usually not used as people release these samples on a “gentleman’s agreement” and because these take so much time to generate. Institutions are moving more and more to requiring MTAs, and I know our legal department would prefer that we always have one in place. I think this case with your family is a great example of how not feasible they are, and once things are finally complete, I will use this as an argument to expedite this process.
Why should Tufts care how the samples are being used? As far as I am concerned, I am the only one who should care how they are used because they have MY NAME and MY BABY’S DNA on it. I’m sure that all the hospital(s) cares about is protecting itself and limiting liability, I get it that they have assets to protect, meanwhile they have screwed me out of six months (because yep, this week marks six months since our third loss.)
March 14th – I wanted to let you know that we received the samples from Tufts. I am emailing the sequencing lab today to ask about getting the DNA extracted and moving forward with analysis.
We still have months to go before we can expect the results of the analysis. I am glad that FINALLY, FINALLY the samples have been sent, but it is disappointing/frustrating/maddening that it took this long to get this agreement in place and get the samples from one hospital to the other when they are literally less than three miles away from each other. If I did something like this at work, namely delayed an action by months when the people I was negotiating with were LESS THAN THREE MILES AWAY, I would probably be fired or demoted. At the very least I probably would NOT get a very good review or feedback on the project. Rightly or wrongly, I feel like these delays are all on Tufts and I hope I don’t have to go to that hospital, or speak to anyone at that hospital, again.
Good things are supposed to happen to those who wait, right?
Currently loving: Full Frontal with Samantha Bee
Currently looking forward to: The Americans season premiere tomorrow night