The Pilot Study for the Selection of Items for the Questionnaire

Based on the literature review, 17 statements (as detailed in length in this chapter) were presented to 40 participants (both Iranians and British) for the following reasons:

a) clarity of the statements and b) possible willingness to give a response. The aim of the study was to see the extent to which general public would have an understanding of or be prepared to give an opinion about scientific findings on consequences (psychological, medical and social/educational) of children born as a result of ART by egg donation. The value of this screening is that it will root out any items in a study questionnaire that are likely to affect any further statistical analysis i.e. all or a significant majority of participants commented that they either do not have any understanding of this topic or are unwilling to give an opinion. Thus, such an item will not to be used in a full-scale research. Participants were 20 Iranians and 20 British males and females from the general public (Iranians were visitors to the UK).

5.4.1 Materials for the Pilot Study

The 17 statements in total were mainly adopted from research findings that have commonly been agreed by scientists on consequences of ART born children. It appeared that almost all reported studies were in the format of negative consequences on the part of a child born by ART. Thus, whilst this may look like a series of items mainly negative about consequences of ART born children, it has the virtue of presenting “factual” scientific findings rather than a series of specially worded negative and positive statements.

5.4.2 Procedure of the Pilot Study

Ethics approval for study 1 (also including the pilot study) was granted from Middlesex University Ethics Committee (see Appendix C). The reasons for conducting the study were explained to the participants by the researcher and it was also stated that participation was entirely voluntary and that participants were free to

withdraw from the study at any time. Furthermore, it was stated that the information provided would be treated in the strictest confidence. The questionnaire/statements sheet was administered to people on a one to one basis following their consent to take part in the study. Participants were particularly requested to read carefully and respond to each statement.

5.4.3 Results of the Pilot Study

The results of the pilot study indicated that almost all participants made no meaningful responses to 5 out of 17 statements. Almost all participants maintained that they were either not clear about what was meant by these statements or had no specific opinion. The following 5 statements were therefore removed from the study for the reasons explained above, as they were not expected to make any significant contribution to the statistical analysis.

5.4.4 Removed Statements from the Questionnaire/Statements

Statement 1: Donor egg conceived children are taller than naturally conceived

children

Almost all participants maintained that they were either not clear about what is meant by these statements or had no specific opinion.

Statement 2: Donor egg conceived children have more chromosomal abnormalities

than naturally conceived children

Almost all participants maintained that they were either not clear about what is meant by these statements or had no specific opinion.

Statement 3: Donor egg conceived children have shorter life expectancies than

naturally conceived children

Almost all participants maintained that they were either not clear about what is meant by these statements or had no specific opinion.

Statement 4: Donor egg conceived children have lower scores on receptive language

skills than naturally conceived children

Almost all participants maintained that they were either not clear about what is meant by these statements or had no specific opinion.

Statement 5: Donor egg conceived children are sometimes considered to be immoral

or unnatural

Almost all participants maintained that they were either not clear about what is meant by these statements or had no specific opinion.

Thus, from the 17statements, the remaining 12 were administered to 121 participants and were subjected to statistical and content analysis. Each statement was treated as a major contributor to public perception and thus analysed separately. The remaining 12 statements are as follows:

5.4.5 Remaining Statements in the Questionnaire

Statement 1: Donor egg conceived children have more childhood illnesses and

medical care compared to naturally conceived children

Lu, Wang and Jin (2013) in a review of long-term follow-up of children conceived through assisted reproductive technology concluded that ART conceived children are

more likely to have childhood illnesses suggesting a significantly higher risk of requiring medical care, being admitted to hospital and surgery (see also Ludwig et al., 2009).

Statement 2: Donor egg children inherit most of their genes from their father

Crowley et al. (2015) reported “although we inherit equal amounts of genetic mutations from our parents, we actually “use” more of the DNA that we inherit from our fathers”. The report is about a study led by Professor Fernando Pardo-Manuel de Villena, from University of North Carolina School of Medicine, who said “mammals are more genetically similar to their fathers than mothers”.

Statement 3: Donor egg conceived children are more likely to be infertile themselves

than naturally conceived children

A research conducted in 2015 cited that “mothers who use donor eggs may actually pass some of their genetic material on to their children through their endometrium fluid”. This makeover could be a disease or infertility issues to a resulting child (https://lehmannhaupt.com/2016/01/06/becoming-a-solo-mom-via-assisted

reproductive-technology-donor-eggs/; see also van Steirteghem, 2010).

Statement 4: Donor egg conceived children with a lack of genetic link (egg or sperm donation) results in psychological adjustment problems

It has been argued that the child may not be entirely accepted as part of the family, and that the absence of a genetic tie to one or both parents may have a damaging effect on the child’s sense of identity (Burns, 1987).

Statement 5: Donor egg conceived children are generally unhappier compared to

naturally conceived children

Wagenaar et al. (2009) on behaviour and socio-emotional functioning in 9-18-year- old IVF children from parental and teacher observations reported that more IVF children scored in the borderline/clinical range on the syndrome scale withdrawn/depressed behaviour compared with their spontaneously conceived counterparts.

Statement 6: Donor egg conceived children are at higher risk of autism than naturally

conceived children

Gao, He, Cai, Wang and Fan (2017) in a meta-analysis of the total 11 records (3 cohort studies and 8 case-control studies) revealed that the use of ART is associated with a higher percentage of autism spectrum disorder.

Statement 7: Donor egg conceived children have lower self-esteem than naturally

conceived children

Zhan et al. (2013) in an overview of studies on psychological wellbeing in ART conceived children reported lower self-esteem in adolescents born following IVF than in the control group.

Statement 8: Donor egg conceived children should be told about the precise nature of

their conception

HFEA (2004) removed the right of gamete donors to anonymity and gave donor conceived offspring a legal right to identify and possibly contact their donors on reaching the age of 18. The legislation was introduced because it was believed that

donor conceived offspring have a right to information about themselves, including their genetic identity, and denying them this information is harmful.

Statement 9: Donor egg conceived children have lower IQ scores than naturally

conceived children

Zhan et al. (2013) in an overview of studies on psychological well-being in ART conceived children reported lower IQ scores following IVF children than in the control group.

Statement 10: Donor egg conceived children are at a greater risk of being expelled

from school than naturally conceived children

Zhan et al. (2013) in an overview of studies on psychological well-being in ART conceived children reported that a higher prevalence of behaviour problems existed in ART children than in the control group. Also, the researchers reported higher incidences of physical aggression and higher rates of being suspended or expelled from school in IVF adolescents than in the matched control group, which did not occur when they were teenagers.

Statement 11: Donor egg conceived children might experience overt prejudice from the wider community, relatives and friends

Fasouliotis and Schenker (1999) stated that negative attitudes might exist towards reproductive technologies, with procedures such as IVF and DI sometimes considered as immoral or unnatural. As a result, families with a child conceived by assisted reproduction may experience overt prejudice not only from the wider community but also from relatives and friends (see also McNair, 2004).

Statement 12: Teachers should be informed of which children in their class have

been born by egg donation

This statement is important, as it has been reported that the quality of parenting and the psychological adjustment of egg donation children and their parents may differ with Donor Insemination (DI) and IVF conception. For example, in egg donation families, mothers seemed to respond less sensitively to their child’s needs, compared with mothers in DI and IVF families (Murray, MacCallum & Golombok, 2006). Although, on the school adjustment, no differences were found between children conceived by any of the three methods of conception. However, no research has been directed at how school adjustment is affected in Iranian egg donor families. This thus raises the question that if indeed, school adjustment is affected by egg donor families in Iran, teachers should know the origins of the problem and engage in appropriate intervention. Thus, this statement was selected as an option to put forward to the public and to the mothers with egg donation conceived children for their comments.