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Background: Cystic fibrosis (CF) is a genetic condition that affects the respiratory health of those afflicted. The life expectancy of individuals with CF has improved considerably due to recent medical advances, as a result of which the majority now reaches reproductive age. The substantial daily life impact and possibility of early mortality however raises questions about family planning. Objective: The aim of this systematic review was to assess the psychosocial and ethical considerations of individuals with cystic fibrosis and their partners with regard to reproductive decision-making. Methods: The protocol of this systematic review was preregistered on PROSPERO. Four databases were searched and studies meeting the inclusion criteria were coded and analysed using the thematic synthesis approach. Results: Six psychosocial and ethical themes related to reproductive decision-making in people with CF and their partners were identified: 1) a ‘normal’ desire for children, 2) impact on a child, 3) good parenting, 4) passing on the disease, 5) impact on health status and personal life, and 6) partner (in) perspective. Conclusions: People with CF experience the same desire to have children as their healthy peers do. This desire is related to the wish to have a normal life, in which having children is often seen as a substantial part. People with CF and their partners however take several elements into consideration before starting a family. The possible impact of parental illness on the child, the combination of childcare with selfcare and daily treatment regimen compliance, and the increased parental responsibilities of the non-CF partner were three main concerns. Healthcare providers should initiate conversations on reproductive decision-making to support individuals with cystic fibrosis and their partners during the entire process.

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Background: Carrier screening is the genetic testing of asymptomatic individuals or couples to identify those who are at increased risk of conceiving a child affected by a monogenic autosomal of X-linked recessive disorder. Technological advances have made it possible to screen for hundreds of recessive disorders in a single test. This panel-based screening is called expanded carrier screening (ECS). Since October 2019, a Belgian Genetic Expanded Carrier Screening test (BeGECS) is available to all couples planning a pregnancy in the form of a pilot study. To ensure a responsible implementation of ECS in Belgium, it is necessary to gain insight into the societal views regarding ECS. Objective: The aim of this study was to explore the interest, attitudes and preferences of the broad general population in Belgium regarding ECS. Materials and methods: Between October 11 and December 9, 2019, a written, paper survey was administered to patients in the waiting room of six different general practices in the provinces of Antwerp and Flemish Brabant, Belgium. Prior to completing the survey, written background information was provided about the concept of carrier screening, the risk of being a carrier couple and the associated risk of conceiving an affected child, and the reproductive options available for carrier couples. Results: The survey was completed by 707 participants with a mean age of 45.6 years old. Most participants (59.3%) had not heard of carrier screening prior to participating in this study. Moreover, 52.3% of our respondents perceived their risk of being a carrier as (very) low. In total, 57.7% of the participants indicated intention to participate in ECS. The great majority thought it (rather) acceptable to test both couples with a desire to have children (85.5%), individuals (81.2%) and pregnant women (80.6%) for their carrier status. However, a considerable part of our respondents were concerned that ECS will lead to a great pressure to get tested (56.7%), to a greater anxiety (45.6%) and to unrealistic expectations of having a healthy child (37.4%) among couples planning a pregnancy. The gynecologist (72.5%), the general practitioner (70.0%) and the center for human genetics (65.4%) were by far the preferred providers of ECS. Couple-based test results were preferred by more respondents (46.7%) than individual test results (31.3%). Most participants (64.9%) were willing to pay out-of-pocket for ECS. Of those, 53.0% were willing to pay a maximum of 150 euros and only 3.9% were willing to pay more than 600 euros. Conclusion: This study indicates a considerable interest and an overall positive attitude among individuals of the general Belgian population regarding ECS. However, the study findings also emphasize the necessity of informing and educating the general population about ECS, and providing qualitative pre- and post-test counseling to prospective parents to address potential misconceptions and concerns. The results of this study can be used in the ongoing debate about the acceptability and desirability of ECS and support the responsible implementation of ECS in the Belgian healthcare system.

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Background: Reproductive genetic carrier screening (RGCS) allows to inform prospective parents whether they have an increased chance of conceiving a child with an autosomal recessive or X-linked disorder. In 2019, the Belgian Expanded Carrier Screening (BeGECS) test became available on request through one of the genetic centers in Belgium. Previous studies revealed that reproductive-aged men and women in Flanders found it to be acceptable to offer RGCS in routine healthcare, with the gynecologist being preferred to do so. However, little is known about the views of these health care professionals towards RGCS. Objectives: The objective of this thesis project was to study the knowledge, attitudes and perceptions of gynecologists in Flanders towards RGCS. Materials and methods: A qualitative research method was adopted to investigate the in-depth views of gynecologists who were professionally active in Flanders. From December 2022 until April 2023, nine semi-structured interviews were conducted based on a pre-prepared interview guide. All interviews were audio-recorded and transcribed verbatim for further thematic analysis using NVivo 1.7.1. Results: Six major themes emerged during the interviews with the gynecologists. (A) The existence of RGCS: only four participants indicated to be aware of the existence of the BeGECS test. (B) Possible consequences associated with RGCS: eugenics and the societal impact of RGCS were expressed as concerns. (C) The RGCS offer: doubts about the added value of RGCS resulted in a reluctance to offer the test. (D) The price of RGCS: divided opinions were voiced regarding the cost-benefit ratio and affordability of the BeGECS test. (E) The role of other healthcare professionals: the majority did not see a central role for the gynecologist in the testing offer, suggesting a collaboration or network approach with other healthcare providers. (F) The perceived barriers: a lack of time and knowledge, together with a possible language barrier, were perceived as factors hindering the gynecologist’s ability to offer the test. Conclusion: This study shows a limited awareness among Flemish gynecologists regarding the BeGECS test. When they were informed, a rather critical attitude was observed. Other findings of the study further explain this, with concerns about long-term ethical and societal consequences, along with various practical difficulties, such as a time and language barrier. Raising awareness among stakeholder in combination with various facilitators, such as a network approach and language support, should be considered to promote the implementation of the BeGECS test in routine healthcare. These results can serve as a voice in the debate on the general implementation of the BeGECS test in routine healthcare.

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The Belgian fertility rate has been declining, while the mean age of women having children is increasing. This delay in parenthood has several consequences, such as male and female age-related fertility decline. Earlier research has indicated that individuals often overestimate their fertility potential and that there are several misconceptions about fertility among the population. These factors could contribute in not achieving the desired number of children. So far, research in Belgium has only focused on specific populations like secondary school pupils and medical students. We conducted a cross sectional survey study using a convenience sampling. Non-pregnant individuals of reproductive age without children were invited to answer a self-reported questionnaire. First, a pilot study was conducted with participants who met the inclusion criteria to screen for any difficulties or misconceptions in the questionnaire. The sample size was calculated based on the number of individuals and the distribution of men and women in the target population. Data collection was carried out from November 2023 until February 2024. The target population consisted of non-pregnant reproductive-aged individuals (18-45 years) residing in Belgium and without children Participants were recruited online and through public advertisement. A structured questionnaire which consisted of four parts was used to measure:socio-demographic characteristics,fertility knowledge by means of the Cardiff Fertility Knowledge scale,reproductive intentions through the taxonomy developed by Grace et al. (2022) and sources of fertility information. The study sample consisted of 2092 participants. The majority of participants were highly educated women that were born in Belgium. The mean age of the participants was 26 years. The majority of participants corresponded with the group of desirers (58.8%), followed by the flexers (27.9%) and at last the avoiders (12.6%). The mean number of children the participants wanted was two, at a mean age of 30 years for the first child. On average, participants answered 7 out of 13 knowledge questions correctly (SD 2; IQR 6-9) with women scoring significantly higher than men (mean difference 0.51; p < 0.001) and desirers scoring significantly higher than avoiders and flexers (p < 0.001). The most used sources of fertility information were the internet, friends and family. This study was a non-probabilistic, convenience sampling and therefore the results should be interpreted with caution. Risk of bias was limited by, among other things, a large sample. The findings of our study suggest that there is a need for tailored fertility campaigns to reach specific groups in the society. The Belgian Fertility Education Initiative (BFEI) can be an important partner in achieving this recommendation. Secondly, fertility education programs should be integrated more in primary and secondary schools. Besides, fertility information given to patients should be adapted based on their parenthood intentions. The reproductive life plan can be a useful tool. At last, health care providers should actively ask about the use of internet and recommend evidence based websites.