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Having leftover embryos after IVF treatments is one of the hardest scenarios to imagine when you embark on the journey of infertility and IVF. But all too often, post- IVF patients find themselves in this exact place – their family is complete, but they’re left agonizing over the reality of having too many embryos while simultaneously facing limited options as to what to do with them. In many cases, parents feel there is simply no good choice, so they remain in limbo indefinitely.
(Are you struggling with what to do with your leftover embryos? We would love to help. Check out our free 10-Step Guide at the bottom of this post.)
However, for some parents, donating to science is an alluring option for several reasons. Not only does it provide an opportunity for researchers to learn more about human disease and development, or help rising embryologists learn the intricacies of the IVF process, but it also provides many parents with a comforting sense of peace and purpose, knowing their embryos are being used in a way that could bring benefit or healing to the multitudes. Their embryos have meaning, value, and worth and many parents feel this is one way their embryos can make a positive and lasting impact in the world.
So, several weeks back, I sent out a message to my private Facebook group to ask them what they would like me to address next on my blog. Although I have plenty of topics and ideas in the pipeline, I wanted to serve their needs first.
One of my members responded to my inquiry wondering about this exact topic.
She wanted to know more about donating her leftover embryos to science/research, what institutions to consider, and how to make a good choice. It was a topic I already had on my list, so I gladly moved it to the top and got busy researching. I spent several weeks looking deep into this option and talking to professional staff from various clinics and institutions across the United States.
I have to admit – I wasn’t prepared for what I found out.
But let me start at the beginning.
(*Research was done in the United States only.)
I began my research around the option of donating to science where anyone would naturally start – my own clinic. Although we’ve chosen the option to use our embryos to grow our family, I asked the staff at my clinic about 1) the other choices available for our leftover embryos and 2) for any additional information they could provide me about each choice.
They told me that they work side by side with an embryo disposition company that provides information to their patients about each available option. The company also helps to facilitate paperwork, communication, and coordination when a patient is ready to make a decision.
Basically, because the process of embryo disposition can be complex and time consuming, our clinic has chosen to outsource this service in order to streamline procedures and lessen the burden on clinical staff (I have since learned there are a few of these companies and many clinics utilize them). Partnering with a company like this makes plenty of sense – my clinic in particular is extremely busy and has limited time to handle the complexities surrounding disposition options.
Before diving into the embryo disposition company website, I asked several more questions of the clinical staff at my personal location specifically about donating to science on a clinic level and/or a national level. In my questioning, I found out my clinic is not accepting leftover embryos for their own research, trials, or training. The staff didn’t have any information or knowledge about active national programs, but they pointed me to a list of institutions available on the disposition company website that I could start with.
Knowing my clinic couldn’t provide me with any more information about donating to science on a broader level, I turned to the disposition company for answers.
Easy enough. Or so I thought.
Once I familiarized myself with the website and located the “Donate to Research” option, it didn’t take me more than five minutes to realize I had my work cut out for me.
The very first company I called seemed to have changed names, changed phone extensions, and no longer had a website under their name. In fact, when I clicked the website link, I was redirected to a blogging/writing style website that had absolutely nothing to do with the corporation I was looking for. After calling the company’s phone number three times and finally getting a person on the phone (who was very nice), I discovered that not only was the said company out of business, but it had been acquired by a pharmaceutical company several years prior.
Immediately, I knew I was working with a list that was completely out of date. I had a sinking feeling donating to science wasn’t as easy as it seemed on the surface.
As I began to dig deeper, I realized I was at the beginning of a wormhole.
“I DON’T KNOW WHAT TO TELL YOU”
The woman I spoke to at the pharmaceutical company was incredibly kind and helpful and did her best to point me in a direction that would offer some guidance or answers about donating leftover embryos to science. She sent me directly to her company’s medical communications department that deals with inquiries for clinical trials. I spoke with a very nice gentleman and was told they were not accepting leftover embryos for research purposes and, in fact, they didn’t do that type of research at all. However, he redirected me to another company that might be able to help.
I took down the information, added to it my inventory of places to call, and continued down the list provided by my embryo disposition company.
What I didn’t know then was this – redirection and chasing my tail would become a common occurrence.
Over the course of several weeks, I slowly heard back from various clinics, universities, companies, and institutions around the U.S. In almost every single case, the answer was the same –
“We’re currently not accepting leftover embryos for research at this time. And, unfortunately, I don’t know when or if we will re-open the program and I don’t know of any other program accepting embryos for this purpose. I’m so sorry. I don’t know what to tell you”.
And, in every single case, I was redirected to another university, company, or institution that I could pursue. The list I had kept growing longer and longer until I finally came to the point that some universities or companies were recommending other universities or companies that I had already crossed off my list. Honestly, the process was mind-boggling, highly discouraging, and overwhelming.
At this point, it was apparent that I was beginning to go in circles. In addition, I realized my list could potentially become never ending as each new contact recommended more and more places I could check with. But, with every email or phone call, there was one thing in common. Every person I spoke to wished me the best of luck , but warned me that the answer regarding donating leftover embryos to science would likely be the same at other institutions.
And it was.
WHY ARE THEY NOT ACCEPTING EMBRYOS?
When I asked why these institutions were no longer accepting leftover embryos for donation to research, I received a variety of answers, each legitimate in its own right.
Several of the entities on my list used to accept leftover embryos many years ago. However, at the time of this writing (Fall 2019), in most cases these institutions simply have all the embryos they need to carry out their research, especially in the case of stem cells. As it was explained to me, in the simplest of terms, scientists can create new stem cells from existing stem cells, and this process can continue indefinitely. This, in effect, negates the need for newly donated embryos to obtain new stem cells.
Other reasons for declining leftover embryos for science/research donation included the following: decrease in federal funding for clinical trials in this area, lack of funding in general, legal aspects or implications around use of embryos for research, current politics around use of embryos for research, not currently involved in any research needing embryos, or having reached the approved limit of derived embryos.
There’s simply no room for negotiation. It is what it is.
ARE ALL THE DOORS CLOSED?
Needless to say, the investigative process was beginning to break my heart as I realized the implications for so many of my fellow post-IVF-leftover-embryo-parenting warriors. The more I picked apart the option of donating to science, the more my spirit started to mourn.
Although it’s very possible I did not exhaust all potential leads, I had to make the choice to stop after numerous top universities, institutions, clinics, and corporations affirmed what my heart and mind were discovering – most places were closed with no intention of re-opening any time soon. My list was growing, but the answer remained the same. At some point, I had to accept the general consensus and call it quits.
However, I did find a small glimmer of hope for some patients who desire to donate their leftover embryos to science. But, unfortunately, it’s not available to everyone.
Nearly all of the professional staff I talked to agreed that donating leftover embryos to science is now down to the clinic level. This means that if your personal clinic is involved in their own research, has direct affiliation with research institutes/other clinical trials, or has current teaching opportunities for new embryologists, you may have the option of donating to science through this route.
Of course, this begs the question – if my clinic is not accepting embryos for research, but another one is, will that clinic accept my embryos?
I had the same thought, so I checked it out. I called a handful of clinics within my state and outside my state to see if 1) they were accepting embryos for research and 2) if they would allow me to donate my leftover embryos to them for research purposes even though I wasn’t their patient.
Although I found a few clinics that are currently accepting leftover embryos for research, as feared, I was told that I would not be allowed to donate my leftover embryos to them since I wasn’t a patient of their practice. In fact, I was informed that most clinics follow this guideline. In general, you must be a patient of the practice to donate leftover embryos to their specific clinical studies. Again, there were various legitimate reasons provided, many of which mimicked the explanations given above by formal universities and institutions, such as legal implications, lack of funding, no current active trials, or having enough embryos from their own patients to satisfy their needs.
Graciously and kindly, each person I spoke to (usually the clinic Research Coordinator) checked with the head embryologist and lab director just to make sure. It’s worthy to note that, if our embryos had been accepted, understandably, we would’ve been responsible for shipping costs to transfer our embryos from our facility to their lab, falling somewhere in the ballpark of $1200, give or take. As it turns out, this was a moot point. But still good to know and something I thought you would find valuable to keep in mind.
THE BOTTOM LINE
I truly hate to say what I’m about to say.
But, it seems its come down to this:
It appears that the option to donate to science may not be an option at all unless your personal clinic is running their own trials, is involved in outside trials, or has direct affiliation with a research institution. For the most part, donating your leftover embryos to research seems to be shut down at a national level (where you can donate to any institution regardless of your status as a patient). If this is the choice you are seriously considering, your best bet is to call your personal clinic and find out if you can donate directly to them.
Beyond that…I’m so sorry. I don’t know.
I want so desperately to be wrong. I hope I’m missing something. I hope there are still national programs out there currently accepting embryos that I didn’t come across. If you find one, please, please, please drop a comment below or email me so I can follow up and list them as a resource on my site for other readers. If your clinic accepts leftover embryos for research, please ask them if they’re willing to accept embryos from other parents who are not their patients and then PLEASE let me know so I can share.
But, unfortunately, I’m not keeping my hopes up. I promise I’m not trying to be negative. I’m just being realistic.
Friends, I started this research in hopes that I could provide you with a list of national programs around the country that were currently accepting leftover embryos for scientific research. Honestly, I was sure I could find a few. I never expected I would find none.
On the clinical level, although I could potentially call every IVF practice in the U.S. and make a list of those that accept leftover embryos for research, this is simply not practical for two reasons. First, this is a dynamic, ever-changing process. Although some individual clinics may accept embryos for research today, their programs can close at any time. Likewise, clinics that are not currently accepting embryos for research could potentially have new opportunities arise in the future. Either way, its clear any list I make would quickly become outdated. Perhaps this is why the information I was given by my embryo disposition company is outdated itself. Second, it’s simply too time-consuming for this busy mama of four. I’m shocked at how many hours it’s taken just to get this far.
Of course, I still advise you to do your own research – this is a dynamic process that is subject to change. But, at the time of this writing (Fall 2019), these are my general findings around donating leftover embryos to science.
In my honest opinion, the best approach is to stay in touch with your clinic and get realistic answers. Hopefully, donating your leftover embryos to science is an option for you. But if not, be sure to ask your clinic when, and if, they will open their doors again. It may be a year or two, but it’s possible it could be a decade or more. In some cases, the doors may be closed indefinitely. Either way, it’s important to find out. If this is the option you’re currently leaning towards, this information will heavily impact your ultimate decision with your embryos.
If you’re on the opposite end of the spectrum, and you’re just beginning your journey with IVF and have not picked a clinic, started your cycle, provided a down payment, etc, I highly encourage you to consider what you want to do with your leftover embryos, should you have them. If donating to science is an option that you would strongly consider, it may be worth your time to call around and find a clinic that is actively accepting leftover embryos for research before unknowingly committing yourself to a practice that, in reality, cannot offer this option to you in the future. Having leftover embryos is one of the hardest realities post-IVF parents may one day have to face. Knowing this information upfront, and adjusting your clinic choice if possible, may save you a lot of heartache in the future.
And on a personal note, on behalf of all of you who currently have leftover embryos (and even somewhat for myself and my husband, even though we’ve made our choice), I have to admit I’m sad, frustrated, angry, bewildered, disappointed, and extremely let down. My heart is heavy and my soul mourns. I simply cannot believe the options for parents with leftover embryos have somehow become even more limited.
I believe it’s tremendously misleading for IVF clinics to present this option to patients when in reality it may not be an option at all. My own clinic has no idea that our embryo disposition company is providing resources that are out of date and useless (but I plan to let them know).
Although donating to science may be available to some through their private clinics, it’s painfully obvious that circumstances have changed and countless doors have closed. I urge anyone reading this who currently works in an IVF office to become up to date on the current status of donation to research in your own clinic, and on a national level, and inform your patients accordingly.
It’s only fair.
Praying comfort, peace, wisdom, and discernment for all of you struggling with your decision for your embryos.
Are You Struggling With What To Do With Your Leftover Embryos? We would love to help.
Get our free 10-Step Guide to help you take the next steps on your journey with your leftover frozen embryos and begin to live with peace in your hearts. We’ve personally followed each step in this guide on our own journey – and over time we’ve received discernment, clear direction, and hope. We pray you find it helpful, encouraging, thought-provoking, and full of inspiration for your journey. Access the guide here.
P.S. If you need additional support or guidance as you consider your choices with your embryos, please join our private FB community, Leftover Frozen Embryos Support Group. Here, we talk in real time with other parents about the difficulties of living life with leftover frozen embryos and the options we have moving forward.