Parental disclosure of assisted reproductive technology (ART) conception to their children: a systematic and meta-analytic review

Abstract

Study question: Does a genetic link and/or a child's age influence a parent's willingness to talk to a child about how they were conceived?

Summary answer: The presence/absence of a biological link and the child's age clearly influences the disclosure process.

What is known already: The research published to date has yielded diverse findings on autologous and donor assisted reproductive technology (ART) parents' disclosure of the conception method to their children and on the ages at which the children are informed, if told.

Study design, size, duration: A systematic review and meta-analysis were carried out. A search of MEDLINE and PUBMED was run for English-language studies published from January 1996 through January 2015. A total of 26 studies were included in the systematic review, 19 of which were included in the meta-analysis.

Participants/materials, setting, methods: A total of 2814 parent responses were included in the systematic review. Two authors independently assessed the studies for review inclusion. Selection criteria were: peer-reviewed studies, quantitative studies only, research conducted after the birth of ART-conceived children, number of parent responses on disclosure status reported in terms of Told, Plan to tell, Uncertain, Plan to not tell. Thirty-two (32) study-level effect size statistics were included in the meta-analysis. Three authors independently assessed the risk of bias.

Main results and the role of chance: Among parents who responded, 23% of the total number of parent responses indicated that they had already Told; 44% were Planning to tell; 13% were Uncertain and 20% were Planning to not tell their children about their ART conception. Meta-analysis gave no statistically significant differences between autologous and donor ART in the <10 years age group, when comparing Told versus Planning to tell/Uncertain/Planning to not tell. In both cases, the probability of disclosure was <50% (P < 0.05). Conversely, in the older age group (≥10 years old), a statistically significant difference was observed for autologous ART (Cohen's h = 0.86): Planning to tell showed a higher probability in the 10 years age group for the autologous ART subsample, than in the donor ART subsample (Cohen's h = 0.89).

Limitations, reasons for caution: All parents participated voluntarily in the studies and may have influenced the data in the direction of disclosure thereby. The reviewed studies, moreover, differed in terms of methodology, type of sample and data categorization method. The number of studies analyzing disclosure for children ≥10 years was quite limited; and lastly, most of the data examined were not collected longitudinally.

Implications of the findings: The high number of non-disclosing parents treated by donor ART points to an underestimation of the medical risks for the offspring (the presence of genetic illnesses, inadvertent consanguinity) and suggests that these children's rights may not be given due consideration. The decision to disclose may become more difficult over time, and ART parents need greater psychological support throughout the process.

Study funding/competing interests: The study was funded by the University of Trieste.

Keywords: assisted reproductive technology; children; children's age; disclosure; donor ART; homologous ART; meta-analysis; parents; review.