Experiences of parents and children born after preimplantation genetic testing largely positive, reports study
Little research has explored family experiences after
preimplantation genetic testing (PGT) for monogenic disorders (PGT-M) or PGT
for structural rearrangements (PGT-SR), particularly regarding how parents
discuss the condition with their children. The objective of this study was to
understand whether parents tell their children about PGT-M or PGT-SR and their
reflections on the advantages and disadvantages of the treatment.
A total of 47 parents with a child born after PGT-M or
PGT-SR completed a survey between December 2019 and May 2020. Parents were
asked open-ended questions about telling or not telling their children about
PGT, how their children understood and reacted to being conceived using PGT,
whether parents had any worries about their use of PGT, and parents’ general
reflections on the advantages and disadvantages of using PGT. The sample was
drawn from a previous study examining the obstetric and neonatal outcomes of
children born after PGT. The sample response rate was 47.19%. Children were aged
4–18 years. Data from the open-ended questions were analyzed using qualitative
content analysis and frequency counts and percentages were computed.
Illustrative Quotations are provided in the tables. The Danish Data Protection
Agency approved the data collection. Questionnaire studies do not require
approval from ethical committees or institutional review boards in Denmark.
Most parents told their children to be truthful, and they
saw no reason not to do so. For parents who had not yet told their child, this
was predominantly because the child was too young. Two respondents anticipated
that disclosure would be difficult. A total of 23 parents gave responses for
how their children responded to finding out about the use of PGT-M or PGT-SR.
The most common reaction was indifference, followed by feeling excited,
special, or curious. Most parents told their child to be truthful indifferent
about it at the time of the study.
For the 10 parents who said they worried about the child,
the reasons for their worry included whether the treatment will cause other
medical problems given that it is a relatively new treatment method (n = 5),
whether their child will have trouble conceiving in the future (n = 2), whether
the child will be able to access PGT when they need to (n = 2) and feeling
unsure of their decision to use it (n = 1). All parents stated that they would
recommend the treatment method to others. A total of 38 (80.9%) parents explained
why they would recommend PGT to others, with the most common reason being that
it enabled parents to have a genetically related child. In terms of the
advantages of PGT, the main advantage was the ability to have a healthy child.
Seven of the participants mentioned that PGT allowed them to have children
where they otherwise may have chosen not to. Other advantages included avoiding
miscarriage and being able to enjoy the pregnancy knowing that the infant was
healthy. The main disadvantage involved the adverse effect of the treatment,
specifically in response to the hormonal treatment received, and it is a
lengthy and invasive process that also took a toll on mental health
To author’s knowledge, this is the first study to examine
the experiences of parents raising a child born after PGT. The findings from
the study are reassuring and show that families who have used PGT have positive
experiences of the treatment, and children are reported to feel either neutral
or positive about having been born after the treatment.
Source: Vasanti Jadva, Ph.D.a,b Kate Shaw, B.A.b Bjørn Bay,
Ph.D.; Fertility Sterility;
