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;
