When our embryos were labelled 'abnormal', we lost the right to choose

'After six years, four countries, and more than 30 IVF cycles, a genetic label decided which of our embryos we were allowed to keep trying with – not our doctors, and not us.'

These words belong to a patient I interviewed as part of a qualitative study on embryo transfer decisions. She and her husband had undergone PGT-A – preimplantation genetic testing for aneuploidy – because they were told it would improve their chances. Instead, it foreclosed them.

As a fertility physician, clinical geneticist, and bioethicist, I have spent years studying how patients navigate the space between medical authority and reproductive hope. What I have learned has troubled me deeply: patients are not rejecting science. They are rejecting the categorical certainty with which uncertain results are wielded against them.

What PGT-A actually tests

PGT-A examines a handful of cells from the outer layer of a five-day-old embryo – cells destined to become the placenta, not the child. From this small sample, a laboratory extrapolates whether the entire embryo is 'normal' or 'abnormal.' But embryos at this stage commonly contain aneuploid cells, and evidence shows they can self-correct as development proceeds (see BioNews 1363). A trophectoderm biopsy does not diagnose the future fetus; it offers a probability, not a verdict.

Yet in practice, that probability is treated as definitive. Embryos labelled 'abnormal' are often refused for transfer or discarded entirely – sometimes without the patient's explicit consent, and frequently without clear explanation of the test's limitations. My patient put it starkly:

'Nobody ever showed us evidence that our specific embryos could not have become our children. What we were shown was a label, and then a locked door.'

What patients told us

In our recently published study of 21 patients who transferred embryos labelled 'abnormal,' we identified a recurring pattern we called 'Reclaiming Possibility.' These were not impulsive decisions. Patients moved through phases: first, unlearning the authority they had initially granted to PGT-A; then, navigating institutional resistance and sometimes family disagreement; next, embracing a moral responsibility to give their embryos a chance; and finally, making peace with whatever outcome followed.

Several themes stood out. Patients described profound institutional distrust after repeated failures with 'normal' embryos. As one woman in her early 40s said:

'Our doctor once said, "Everything I've transferred has come out exactly like the PGT-A reported". I replied: "But you transferred a normal boy embryo, and it turned into a blighted ovum. So clearly it wasn't normal".'

They also described what I can only call wrongful discrimination. One couple in their mid-40s refused transfer across multiple countries, told me:

'If we hadn't tested, they would have happily transferred the embryos. Because we tested, they will not.'

The act of testing, and not the embryo's actual developmental potential, triggered clinical rejection. Many patients discovered transfer policies only after testing was complete, leaving them trapped: too informed to proceed naively, too constrained to proceed at all. Several shipped embryos across borders to find a clinic willing to try. The cost – financial, physical, emotional – fell entirely on them.

The asymmetry that troubles me most

One detail from my interviews continues to haunt me. A patient in California consulted a physician who had himself published research suggesting PGT-A may discard up to 40 percent of viable embryos. The physician read their file, agreed the science was uncertain – and told them he still could not transfer. Regulation, he said. Policy.

'I remember thinking,' the patient told me, 'the label has more power over my body than my doctor does, and more than I do.'

This asymmetry, between what clinicians publish and what clinics practice, is ethically untenable. If the evidence base is uncertain enough to question in peer-reviewed journals, it is uncertain enough to question at the point of care.

What needs to change

First, informed consent must happen before testing, not after results constrain options. Patients deserve to know: What are the test's limitations? What is the clinic's policy on transferring embryos labelled 'abnormal'? What happens if all the embryos receive that label?

Second, transfer pathways must exist. When patients understand the risks, including the possibility of miscarriage or, rarely, a child with a chromosomal condition, and choose to proceed, that choice should be available under robust informed consent with a clear prenatal diagnostic plan.

Third, professional guidance must catch up with the evidence. In 2024, the American Society of Reproductive Medicine acknowledged that PGT-A has not been demonstrated to improve cumulative live birth rates. Yet, worldwide, testing uptake continues, and categorical refusals persist. Guidance that neither individualises indications nor discourages routine use outsources the hardest decisions to patients and clinics, with patients bearing the consequences.

Accepting the uncertain

Among the patients I interviewed, six achieved healthy live births after transferring embryos labelled 'abnormal.' Others experienced failed implantation or early miscarriage, but remarkably, none regretted trying.

As one patient told me: 'If she's gonna die, we want to give her the best chance of life possible.' Although this transfer did not end in a live birth, she was satisfied that she gave that embryo a chance at life.

I do not argue that all embryos labelled 'abnormal' should be transferred. I argue that a probability should not become a prohibition, and that patients who understand the uncertainty and choose to proceed deserve the chance to try.

The goal of reproductive medicine is not to deliver certainty or promise genetic perfection. We should be there to support people in their first endeavour toward parenthood – which is, and always has been, accepting the uncertain.