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The experiences of parents with a child born following pre-implantation genetic testing

Jadva, V. ORCID: 0000-0003-0922-0694, Shaw, K., Bay, B. , Poulsen, M., Ingerslev, J., Petersen, M. R., Fedder, J. & Kesmodel, U. S. (2024). The experiences of parents with a child born following pre-implantation genetic testing. Fertility and Sterility, doi: 10.1016/j.fertnstert.2024.05.141

Abstract

Objective: Little research has explored family experiences following PGT-M or PGT-SR, particularly regarding how parents discuss the condition with their children. The objective of this study was to understand whether parents tell their child about PGT-M or PGT-SR and their reflections on the advantages and disadvantages of the treatment.

Study Design: 47 parents with a child born following PGT-M or PGT-SR completed a survey between December 2019 to May 2020. Parents were asked open ended questions about 1) telling or not telling their child about PGT, 2) how their children understood and reacted to being conceived using PGT, 3) whether parents had any worries about their use of PGT and 4) 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 for children born following PGT 1. Sample response rate was 47.19%. Children were aged 4-18 years (Median = 9.9, 25th/75th percentile = 8.5/12.50). Data from the open-ended questions were analysed using qualitative content analysis and frequency counts and percentages were computed. Illustrative Quotations are provided in the tables (see methods in supplementary material). The Danish Data Protection Agency (File number 1-16-02-298-15) approved the data collection. Questionnaire studies do not require approval from ethical committees or institutional review boards in Denmark.

Results: Reasons for telling or not telling the child about their use of PGT-M or PGT-SR are shown in Table 1. Most parents told their child to be truthful and they saw no reason not to tell. For parents who had not yet told their child, this was predominantly because the child was too young. Two respondents anticipated disclosure would be difficult. 23 parents gave responses for how their child 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 reported their child to feel 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 (2), whether the child will be able to access PGT if they need to (2) and feeling unsure of their decision to use it (1). All parents stated that they would recommend the treatment method to others. A total of 38 parents (80.9%) 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 advantages of PGT, the main advantage was the ability to have a healthy child (See Table 2). 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 baby was healthy. The main disadvantage involved the adverse effect of the treatment, specifically in response to the hormonal treatment received, and it being a lengthy and invasive process which also took a toll on mental health (See Table 2).

Conclusion: To our knowledge, this is the first study to examine the experiences of parents raising a child born following 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 following the treatment.

Publication Type: Article
Additional Information: © 2024. This manuscript version is made available under the CC-BY-NC-ND 4.0 license https://creativecommons.org/licenses/by-nc-nd/4.0/
Subjects: H Social Sciences > HM Sociology
Q Science > QH Natural history > QH426 Genetics
R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
R Medicine > RG Gynecology and obstetrics
R Medicine > RJ Pediatrics
Departments: School of Health & Psychological Sciences
School of Health & Psychological Sciences > Psychology
SWORD Depositor:
[thumbnail of F and S research letter.pdf] Text - Accepted Version
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