A 2024 study surveyed parents who used PGT-M/PGT-SR to help conceive a child, examining how and why the child was told about PGT, and the child’s reaction.
Pre-implantation genetic testing (PGT) is a common add-on for patients undergoing IVF, which involves testing some of the cells of an embryo for chromosomal abnormalities.
There are several forms of PGT:
- PGT-A = PGT for aneuploidy (to select for euploids with the correct number/structure of chromosomes)
- PGT-M = PGT for monogenic/single gene defects (like cystic fibrosis)
- PGT-SR = PGT for structural rearrangements (like the Robertsonian translocation)
PGT-M and PGT-SR are more personalized treatments that involve examining the genetics of the parents, to provide more sensitive PGT results compared to PGT-A. So the parents interviewed in this study had a condition that could be inherited, or they were a carrier and didn’t want to pass this on to any potential children. To learn more about PGT, check out my Complete guide to PGT-A.
This post reviews a study by Jadva et al. (2024), who looked at the experiences of parents who used PGT-M or PGT-SR, and whether they chose to inform their children about the treatment. While most of the responses are specific to PGT-M or PGT-SR, some may apply to PGT-A. However, it’s important to note that patients undergoing PGT-M may not be infertile, and their primary reason for doing IVF may be to prevent passing on a genetic condition.
🔗 Original studies are referenced in this post or within the linked Remembryo posts.
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How did the parents tell their children about PGT, and how did they react?
The researchers surveyed 47 parents of children aged 4-18 (median age of 9.9), with 23 of these parents sharing insights into their children’s reactions to being told about PGT. For the children that weren’t told, the main reason was that the child was too young.
What motivated the parents to tell their child?
- 42.3% of parents stated that truthfulness was the main motivation for disclosing PGT.
- 38.5% stated that there was no reason not to/no shame about it.
- 34.6% stated that their child may need to PGT themselves one day (I’m assuming this is because the child may be a genetic carrier).
- 30.8% stated that they wanted their child to know that they don’t carry their parent’s disease.
- 23.1% stated that it’s a part of their child’s story.
How did the parents tell their child?
- 42.3% of parents said their goal was to prevent the child from inheriting a condition.
- 19.2% explained that some people need help to have children.
- 19.2% explained that doctors need to choose the best sperm and egg to make the best child.
- 19.2% explained that it was just a part of the IVF process, as part of a discussion on how IVF was used to conceive the child. One parent explained that her eggs were removed and mixed in a bowl with dad’s sperm, with some of the eggs being bad and put in the garbage.
How did the children react to being told about PGT?
- 34.6% felt neutral or indifferent, to them it seemed natural.
- 19.2% felt special or excited.
- 19.2% felt curious.
Parents were also asked about the advantages and disadvantages of PGT:
- 40.4% stated that an advantage of PGT was to have a healthy child free of a genetic condition.
- 25.5% stated that PGT-M could end generations of disease.
- 10.6% stated that PGT could prevent a miscarriage.
- 38.3% stated that a disadvantage of PGT was adverse effects of hormonal treatment during IVF.
- 23.4% stated that it was a long process.
- 14.9% stated that PGT (and IVF in general, I’m assuming) was a psychologically difficult process.
- 8.5% said that it was an unnatural way to conceive, but that doesn’t matter when it’s successful.
Overall, the results show that families who use PGT typically have positive experiences, and children generally feel either neutral or positive about being born as a result of the treatment.
Reference
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About Embryoman
Embryoman (Sean Lauber) is a former embryologist and the founder of Remembryo, an IVF research and fertility education website. After working in an IVF lab in the US, he returned to Canada and now focuses on making fertility research more accessible. He holds a Master’s in Immunology and launched Remembryo in 2018 to help patients and professionals make sense of IVF research. Sean shares weekly study updates on Facebook, Instagram, and Reddit regularly. He also answers questions on Reddit or in his private Facebook group.
Related posts:
IVF outcomes following aneuploid embryo transfer
PGDIS releases 2021 guidelines for mosaic embryo transfers
Paternal (male) effect on embryo aneuploidy examined
Does a PGT-A biopsy match the rest of the embryo?
Euploid embryos show reduced implantation potential with advancing maternal age
Meta-analysis combines 74 studies to examine factors linked to euploid transfer success
Study finds that female age doesn’t impact euploid embryo transfer success rates
Chromosomal errors in IVF: What is aneuploidy and what causes it?