What happens, if after pre-genetic screening, no unaffected embryos are found? Should they be transferred? And if so, who gets to decide?
That’s the subject of a talk by Dr. Wybo Dondorp, a senior research fellow at the Department of Health, Ethics and Society at Maastricht University (The Netherlands), at the 24th annual meeting of the European Society of Human Reproduction and Embryology in Barcelona. If you read this Reuters article, you might think that the patients get to decide about the disposition of their affected embryos. You’d also be wrong.
According to Dr. Dondorp, decision-making about affected embryos must be “shared” between parents and doctor–except, that is, when the doctor disagrees with the parents. Then, the doctor gets to decide that it’s not in the interest of the future child to be born:
“The present consensus is that where the classical indications for PGD are concerned, doctors should, as a general rule, not transfer affected embryos where no non-affected ones are available.
[…] The welfare of the child is closely connected to the classical indication for PGD: a serious disease caused by a single gene mutation for which there are no, or limited, treatments, and, in most cases, presenting early in life. An example is an embryo that is homozygous for cystic fibrosis, where the child will definitely have the disease. In such cases it is inconceivable that doctors would agree to transfer these embryos as it would be at odds with their professional responsibilities.
[…] It must be made clear that there may be, with conditions, room for shared decision-making about transferring affected embryos. But that does not amount to leaving it to the parents, as doctors cannot avoid their professional responsibility for the welfare of the future child.“
Just to be clear, people with cystic fibrosis can live into “their 30s, 40s, and beyond.” But no, their lives aren’t worth living! For now, Dr. Dondorp hasn’t yet ruled on the fates of people with genes for hereditary cancers or other chronic conditions. Those will be decided by a “case-sensitive evaluation of aspects relevant to the ‘high risk of serious harm’ criterion.” Again, not by you, the potential parent!
So what if your doctor decides you shouldn’t transfer your embryos? Dr. Dondorp has some helpful advice:
In pre-test counselling it should be explained that if no non-affected embryos are available, the only options are trying a new cycle or being advised to reconsider one’s reproductive plans such as refraining from reproduction, using donor eggs or sperm, or adoption.
But don’t worry, the doctors won’t immediately dismiss your views about the fate of your embryos. They’ll pretend to listen first, and then do whatever they’ve already decided on.
“Parental requests for transferring affected embryos should not be dismissed beforehand as a sign of irresponsible capriciousness. As the couple’s primary wish may be for a child, they may reason that if a non-affected, healthy child is not what they can get, they will also be happy with, and good parents for, a child with a condition they at first intended to avoid. Respect for autonomy at least requires taking such requests seriously, even if, in view of all other considerations, doctors decide not agree to the requests.“