How would it feel to learn that you were once condemned to — then reprieved from — life-ending experimentation? How would it feel to raise a much-loved son or daughter who nearly ended his or her life on a laboratory slide?
These are not abstract questions for the IVF offspring rejected as flawed after tests at Monash IVF and Repromed in Melbourne, Australia, or for their parents who last year were unexpectedly given a second chance of taking them to term.
The two fertility services were faced with a class action from clients due to the fact that a non-invasive method used to test their embryos was found to be inaccurate. Parents had been told they could destroy their embryos or donate them to research. In a twist to the story, some parents were then told their rejected embryos were still in frozen storage.
The parents of the surviving embryos had a life and death decision to make. Although destined for research, the embryos had not yet been taken out and experimented upon. They were — perhaps still are — very much alive for the purpose of transfer and a possible live birth.
In the words of Repromed medical director, Professor Kelton Tremellen,
“Some people will say ‘I simply don’t want to use them, we’ve moved on.’ Others will say, ‘look, we’ll accept the risk and transfer them and effectively consider them to be embryos that haven’t been tested at all.’”
These two options are presented somewhat neutrally by Professor Tremellen. People with embryos have choices over the fate of those embryos: that is just the way it is. Not only their transfer to the woman seeking treatment, but their very existence is conditional on the woman’s or couple’s wishes: they can choose to have them destroyed outright or presumably, donate them to experimentation all over again.
Acceptance and control
In reality though, accepting the risk that one’s child may be disabled is part and parcel of being a parent. Children are gifts to welcome unconditionally, not products to quality-control. IVF does not help here: the very structure of the method — which mechanically assembles the lives created — puts parents in an ‘owner-type’ position unsuited to parenthood.
Embryos are routinely graded into three categories, of which the first category may be transferred to the mother, the second frozen for possible ‘use’, and the third immediately rejected. A child may be longed for, and the child eventually born deeply loved, but IVF hardly prepares parents to welcome all lives conceived with no strings attached.
All that said, many IVF parents are uneasy about the fate of embryos left in storage. Many do not respond to clinics where their embryos are stored, leaving their fate to be decided by default. For those who already have a born IVF child, in particular, the conflict may be very real. If one’s born IVF child provides a living example of what siblings in storage might be like, it may not be so easy to discard those siblings, donate them to research, or leave them frozen for eternity.
In the words of one IVF mother,
“I had friends and family tell me, ‘Oh, throw them away’ … I couldn’t. Our children were in the same batch. I’d look at them and think, ‘Wow, if someone had grabbed a different straw, our children would still be sitting there.’”
Another mother of IVF twins who were born separately in time records a conversation with her son Felix, in which she explains that he had to wait in the freezer for his turn to be born. On further questioning, Elyssa describes him — to his excitement — as a ‘blob’, but seems to recognise that it was indeed her son who was once in that situation. She comments:
“Surely, one day he will wonder why his sister was born first and he had to wait. When the question comes, will we tell him the truth? That his irregular and fragmented cells meant he was classified as an inferior-quality pre-embryo?
That the pair given the top two gradings (out of the four used in IVF treatment) were placed together in my body first? That if they had grown into twins, instead of one disappearing as the other developed into our daughter, his fate might have been very different?
Cuddling his robust little body, admiring his ceaseless curiosity, helping him enrol Darth Vader into his sister’s make-believe school of cuddly cats, it is difficult to imagine the alternatives.”
Elyssa observes that “practically and financially, a third baby wasn’t on the cards”, and goes on to ask:
“Would we have offered him to medical researchers? Donated him to an infertile couple? Would anyone have wanted the runt of our pre-embryonic litter? Would he still be there, frozen expensively in time, like an estimated two million other ‘frosties’ worldwide?”
In the event, Felix was not scheduled for experimentation, ‘embryo adoption’ or endless frozen limbo. However, he avoided such outcomes only because, when his ‘higher-grade’ siblings were transferred, only one survived.
Research use is the first alternative mentioned by Elyssa: like the Monash IVF and Repromed embryos, Felix might well have been allocated to such deployment but, unlike them, with no second chance. Elyssa is right to find this alternative (and others) disturbing, looking at her lively son who escaped this fate. Parental acceptance, whatever the age of the offspring, should not be such a conditional affair.
Declining embryo transfer may not be the same as deliberate destruction of embryos, but it needs a strong defence. Mere reluctance to have another child seems insufficient, given the fact that a child — a young, immature human individual — is in fact already there.
Embryo transfer is a medical procedure, but a simple one, and embryos are only in their current vulnerable position because of what their parents earlier allowed. Some kind of ‘parental rescue’ seems in order, for those parents who are physically, financially and legally still able to do this.
Often parents — perhaps just one parent — will be in two minds or unwilling, but this is an area where minds can change. The Monash IVF and Repromed parents, for example, may still have their options open. Hopefully some will see the reprieve as welcome, and indeed, some children may already have been born who would otherwise have died at the hands of researchers. A happy escape, albeit an ugly thought.
“I still have six in the bank,” said one US woman, commenting on her own frozen embryos. “They call to me. I hate to talk about it. But they call to me.” Sooner or later, for other parents too, a chance to reflect on the meaning of life, on human equality and perhaps especially, the meaning of parenthood, may make that call too pressing to ignore.