Fig. 1: Uptake of genomic newborn screening in Babyscreen+.<\/b>![\"Fig.](\"https:\/\/www.europesays.com\/ie\/wp-content\/uploads\/2026\/06\/41431_2026_2159_Fig1_HTML.png\")
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Uptake of genomic newborn screening in BabyScreen+.<\/p>\n
Table 2 Participant characteristics.<\/b>Participation in data sources used for this manuscript<\/p>\n
Almost all participants provided demographic data (1080\/1139, 96%). One thousand participants provided responses to questions in the \u2018acceptor\u2019 survey that are included in this paper. This included all participants who proceeded with gNBS (987\/987, 100%), as well as approximately half of the participants who initially consented to gNBS then did not proceed (13\/25, 52%). Ten participants completed a \u2018decliner\u2019 survey, including eight participants who actively declined gNBS during the consent stage, and two who initially consented and then changed their mind. Finally, 24 participants completed interviews, including 22 participants who proceeded with gNBS and two participants who declined gNBS at the consent stage.<\/p>\n
Demographic characteristics for all BabyScreen+ participants and survey respondents are published elsewhere [14<\/a>]. Interviewee demographics are included in Table\u00a02<\/a>.<\/p>\n Results structure<\/p>\n Each section of the results corresponds to one HBM domain. Relationships between domains are noted in italicised text. Quantitative data is denoted through the use of frequencies, proportions and percentages. Qualitative data is denoted using references to quotes which are listed in Table\u00a03<\/a>.<\/p>\n Table 3 Interviewee quotes about decision-making mapped to the Health Belief Model.<\/b>Sociodemographic factors<\/p>\n Our previous work assessed associations between sociodemographic factors and gNBS uptake [14<\/a>]. Of note, having gNBS was positively associated with being thirty years or older (ages 30\u201334, odds ratio (OR) 2.41, 95% CI 1.35\u20134.33; ages 35 and over, OR 2.58, 95% CI 1.38\u20134.81), prior experience of genetic testing (OR 1.8, 95% CI 1.09\u20133.10), and speaking English as the main language at home (OR 1.9, 95% CI 1.02\u20133.54). Parents were less likely to have gNBS if expecting their second child as opposed to their first (OR 0.49, 95% CI 0.30-0.82).<\/p>\n Interview data demonstrated potential reasons for these associations and highlighted other characteristics that are considered in gNBS decision-making. These data are presented in the relevant sections below.<\/p>\n Cues to action<\/p>\n Participants were prompted to consider gNBS via a number of formal BabyScreen+ recruitment pathways (published elsewhere [14<\/a>]). Interviews revealed nuances in the ways that participants interacted with formal recruitment pathways. Some interviewees sought out formal recruitment pathways themselves after hearing about gNBS through their personal networks or looking for research opportunities during pregnancy because of sociodemographic factors, such as working in healthcare (Table\u00a03<\/a>, quote 1). Conversely, some participants needed multiple external prompts to engage with gNBS (Table\u00a03<\/a>, quote 2).<\/p>\n Perceived susceptibility<\/p>\n Most participants believed that their baby had a low susceptibility of having a genetic condition, often based on information about the low statistical likelihood of having a child with a genetic condition (Table\u00a03<\/a>, quote 3). Some interviewees also explained their low perceived susceptibility in relation to\u00a0their sociodemographic factors such as being young, having an uncomplicated pregnancy, receiving low chance genetic screening results during pregnancy, or being healthy themselves (Table\u00a03<\/a>, quotes 4, 5, 6). Conversely, some interviewees perceived their\u00a0susceptibility to be higher because of sociodemographic factors such as being a carrier for a genetic condition or having a professional background in healthcare (Table\u00a03<\/a>, quotes 7). Regardless of pre-existing perceptions, many interviewees reported that obtaining more clarity about their\u00a0susceptibility was a potential benefit of gNBS (Table\u00a03<\/a>, quote 8).<\/p>\n When participants perceived low susceptibility, this sometimes made their gNBS decisions feel easier, thus increasing self-efficacy (Table\u00a03<\/a>, quote 9). However, some participants believed that gNBS would not be of benefit if they had a low susceptibility. In fact, two survey respondents declined gNBS because they thought it was irrelevant in the absence of a family history. Similarly, over a quarter of acceptor survey respondents (270\/1000, 27%), were motivated to consider gNBS because they had a family history of a genetic condition.<\/p>\n Perceived severity<\/p>\n Interviewees were aware that BabyScreen+ gNBS screened for \u2018severe\u2019 conditions. However, many grappled with the subjectivity of this term as well as the variation within and between the many conditions included in gNBS (Table\u00a03<\/a>, quote 10). When attempting to understand the distinction between \u2018severe\u2019 and \u2018not severe\u2019 conditions, some interviewees drew on\u00a0their sociodemographic factors such as lived experience of disability or professional healthcare experience as a foundation (Table\u00a03<\/a>, quotes 11). Regardless of personal context, most interviewees described severe conditions in relation to lethality and quality of life. Some also considered whether conditions were chronic, the impact of intervention or treatment, impact on the family, and impact on the healthcare system (Table\u00a03<\/a>, quote 12).<\/p>\n Many interviewees implied that severity had minimal impact on their decision-making and were open to the hypothetical option of adding milder conditions. However, some interviewees explained that focusing on severe conditions made gNBS decisions easier, thus increasing self-efficacy (Table\u00a03<\/a>, quote 13). Some also felt that gNBS had more benefit if it focused on severe conditions only (Table\u00a03<\/a>, quote 14), whereas others believed that adding mild conditions could increase the benefit of gNBS (Table\u00a03<\/a>, quote 15).<\/p>\n Perceived benefits of gNBS<\/p>\n Most acceptor survey respondents perceived gNBS to be beneficial because it could provide information about what to expect for their baby\u2019s future (951\/1000, 95%), reassure them that their baby would not have a genetic condition (689\/1000, 69%), provide information to give to their extended family (605\/1000, 61%), and enable them to contribute to research (781\/1000, 78%). These perceived benefits were reiterated by interviewees (Table\u00a03<\/a>, quotes 16, 17). Some interviewees also viewed gNBS as beneficial because it could help with diagnosis if the baby developed a health condition in the future (Table\u00a03<\/a>, quote 18) or could fulfil a personal sense of curiosity (Table\u00a03<\/a>, quote 19). Some interviewees believed that they were more aware of such benefits due to sociodemographic factors such as working in healthcare (Table\u00a03<\/a>, quote 20).<\/p>\n Interviewees also considered benefits of gNBS in relation to their personal context (sociodemographic factors). gNBS was seen as particularly beneficial under circumstances such as using a gamete donor to conceive or having family living overseas (Table\u00a03<\/a>, quotes 21,22). Conversely, gNBS was seen as having less benefit for people with non-European genetic ancestry due to underrepresentation in genetic databases (Table\u00a03<\/a>, quote 23). Similarly, there was potential for participants to have less clarity about the benefits of gNBS if they had a family history of a genetic condition (Table\u00a03<\/a>, quote 27).<\/p>\n While those who perceived benefits often\u00a0proceeded with gNBS, some participants did not proceed because the benefits were outweighed by barriers described below. Some did not proceed because they were uncertain about the benefits (Table\u00a03<\/a>, quote 24). Similarly, some participants declined gNBS because they felt that results would not be of value (5\/10 decliner survey respondents, 50%), or because they preferred to address their baby\u2019s health problems as they arose (7\/10, 70%).<\/p>\n Perceived barriers<\/p>\n Most interviewees perceived no or minimal barriers to gNBS. However, some raised barriers, including the length of the education and consent process, potential emotional impact of high chance results, uncertainty about post-result supports, and potential misuse of data (Table\u00a03<\/a>, quotes 25, 26, 27, 28). Interviewees also highlighted that gNBS information was harder to access in the context of sociodemographic factors such as limited English proficiency or computer literacy (Table\u00a03<\/a>, quote 30).<\/p>\n Despite the perceived barriers, most participants proceeded with gNBS. People who proceeded with gNBS either believed that the benefits outweighed barriers (Table\u00a03<\/a>, quote 28), or they had the self-efficacy to overcome perceived barriers (described below). However, sometimes barriers deterred participants from having gNBS. For example, survey respondents who declined gNBS did so because they were concerned about impacts for their baby such as more medical tests, or insurance implications (8\/10, 80%); concerned about impacts for themselves, such as worry (8\/10, 80%); or concerned about data privacy and security (4\/10, 40%). Some participants declined because they did not want to participate in research (2\/10, 20%); or did not have time to do so (1\/10, 10%). Furthermore, three participants did not proceed with gNBS because it was too difficult to provide a second sample after testing on the first sample was unsuccessful.<\/p>\n Self-efficacy<\/p>\n Participants came to BabyScreen+ with varying levels of existing self-efficacy. Some felt that they had a higher baseline level of self-efficacy due to sociodemographic factors such as previous genetic test experience and related professional experience (Table\u00a03<\/a>, quotes 31, 32). The BabyScreen+ model of care also played a key role in modifying self-efficacy. For some, the BabyScreen+ model made it easier to make decisions about and access gNBS. For example, many interviewees appreciated that the BabyScreen+ online education was simple and easy to understand, genetic counselling was available on request, there was no cost, and there were no additional processes required on top of standard NBS (Table\u00a03<\/a>, quote 33). The BabyScreen+ model of care could also increase participants\u2019 perceived ability to manage the implications of having gNBS. For example, some participants felt more equipped to manage high chance results due to availability of and information about post-result support (Table\u00a03<\/a>, quote 34), however some wanted more detailed information (Table\u00a03<\/a>, quote 16). Some also felt that their concerns about data misuse had been alleviated due to information provided by BabyScreen+ (Table\u00a03<\/a>, quote 35). In many cases, this information was obtained from the BabyScreen+ online education. However, at least four participants discussed their concerns about data storage and potential impacts of results with a genetic counsellor before they felt comfortable to proceed with gNBS. We note that some individuals may have contacted a genetic counsellor prior to participation and these contacts are not recorded.<\/p>\n High self-efficacy enabled participants to proceed with screening despite perceived barriers.<\/p>\n","protected":false},"excerpt":{"rendered":"ParticipantsParticipation in BabyScreen+ and gNBS A total of 1139 participants consented to BabyScreen+ research, regardless of whether they…\n","protected":false},"author":2,"featured_media":556365,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_share_on_mastodon":"0"},"categories":[77],"tags":[3548,2564,67848,18,7341,910,458,2565,19,17,133,14644],"class_list":["post-556364","post","type-post","status-publish","format-standard","has-post-thumbnail","category-science","tag-bioinformatics","tag-biomedicine","tag-cytogenetics","tag-eire","tag-gene-expression","tag-general","tag-genetics","tag-human-genetics","tag-ie","tag-ireland","tag-science","tag-social-sciences"],"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@ie\/116820090441472900","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/556364","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/comments?post=556364"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/556364\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media\/556365"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media?parent=556364"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/categories?post=556364"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/tags?post=556364"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}