Background The COVID-19 pandemic restrictions affect provision and quality of neonatal care. This global study explores parents’ experiences regarding the impact of the restrictions on key characteristics of infant and family-centred developmental care (IFCDC) during the first year of the pandemic. Methods For this cross-sectional study, a pre-tested online survey with 52 questions and translated into 23 languages was used to collect data between August and November 2020. Parents of sick or preterm infants born during the pandemic and receiving special/intensive care were eligible for participation. Data analysis included descriptive statistics and statistical testing based on different levels of restrictive measures. Findings In total, 2103 participants from 56 countries provided interpretable data. Fifty-two percent of respondents were not allowed to have another person present during birth. Percentages increased with the extent of restrictions in the respondents’ country of residence ( p = 0·002). Twenty-one percent of total respondents indicated that no-one was allowed to be present with the infant receiving special/intensive care. The frequency ( p < 0·001) and duration ( p = 0·001) of permitted presence largely depended on the extent of restrictions. The more restrictive the policy measures were, the more the respondents worried about the pandemic situation during pregnancy and after birth. Interpretation COVID-19 related restrictions severely challenged evidence-based cornerstones of IFCDC, such as separating parents/ legal guardians and their newborns. Our findings must therefore be considered by public health experts and policy makers alike to reduce unnecessary suffering, calling for a zero separation policy. Funding EFCNI received an earmarked donation by Novartis Pharma AG in support of this study.

The allure of a “data-driven” future healthcare system continues to seduce many. Increasingly, work in Science & Technology Studies and related fields started to interrogate the saliency of this promissory rhetoric by raising ethical questions concerning epistemology, bias, surveillance, security, and opacity. Less visible is how ethical arguments are used as part of discursive work by various practitioners engaged in data-driven initiatives in healthcare. This article argues for more explicit attention to such discursive work in shaping the promissory future of data-driven healthcare technologies. Bringing together the hitherto separated themes of promissory futures and an emic approach to ethics as discursive work, we study how actors engaged various data-driven healthcare initiatives discursively conduct such ethics work, implicitly or explicitly assigning tasks and roles for stakeholders. We conceptualize this with the notion of “ethical framing” and identify three widely recurring types: ethics as “balancing act,” the technical “fix,” and ethics as “collective thought process.” We outline the characteristics of these acts of framing and discuss their implications for the envisaged roles and responsibilities of various actors. In the Discussion section, we outline the added value of bringing the distinct bodies of literature on promissory futures and ethical framing together and outline themes for new research.

Egg freezing has led to heated debates in healthcare policy and bioethics. A crucial issue in this context concerns the distinction between “medical” and “social” egg freezing (MEF and SEF)—contrasting objections to bio-medicalization with claims for oversimplification. Yet such categorization remains a criterion for regulation. This paper aims to explore the “regulatory boundary-work” around the “medical”–”social” distinction in different egg freezing regulations. Based on systematic documents’ analysis we present a cross-national comparison of the way the “medical”–”social” differentiation finds expression in regulatory frameworks in Austria, Germany, Israel, and the Netherlands. Findings are organized along two emerging themes: (1) the definition of MEF and its distinctiveness—highlighting regulatory differences in the clarity of the definition and in the medical indications used for creating it (less clear in Austria and Germany, detailed in Israel and the Netherlands); and (2) hierarchy of medical over social motivations reflected in usage and funding regulations. Blurred demarcation lines between “medical” and “social” are further discussed as representing a paradoxical inclusion of SEF while offering new insights into the complexity and normativity of this distinction. Finally, we draw conclusions for policymaking and the bioethical debate, also concerning the related cryopolitical aspects.

ObjectivesThe COVID-19 pandemic has disrupted healthcare systems, challenging neonatal care provision globally. Curtailed visitation policies are known to negatively affect the medical and emotional care of sick, preterm and low birth weight infants, compromising the achievement of the 2030 Development Agenda. Focusing on infant and family-centred developmental care (IFCDC), we explored parents’ experiences of the disruptions affecting newborns in need of special or intensive care during the first year of the pandemic.DesignCross-sectional study using an electronic, web-based questionnaire.SettingMulticountry online-survey.MethodsData were collected between August and November 2020 using a pretested online, multilingual questionnaire. The target group consisted of parents of preterm, sick or low birth weight infants born during the first year of the COVID-19 pandemic and who received special/intensive care. The analysis followed a descriptive quantitative approach.ResultsIn total, 1148 participants from 12 countries (Australia, Brazil, Canada, China, France, Italy, Mexico, New Zealand, Poland, Sweden, Turkey and Ukraine) were eligible for analysis. We identified significant country-specific differences, showing that the application of IFCDC is less prone to disruptions in some countries than in others. For example, parental presence was affected: 27% of the total respondents indicated that no one was allowed to be present with the infant receiving special/intensive care. In Australia, Canada, France, New Zealand and Sweden, both the mother and the father (in more than 90% of cases) were allowed access to the newborn, whereas participants indicated that no one was allowed to be present in China (52%), Poland (39%), Turkey (49%) and Ukraine (32%).ConclusionsThe application of IFCDC during the COVID-19 pandemic differs between countries. There is an urgent need to reconsider separation policies and to strengthen the IFCDC approach worldwide to ensure that the 2030 Development Agenda is achieved.

Background Egg freezing has emerged as a technology of assisted reproductive medicine that allows women to plan for the anticipated loss of fertility and hence to preserve the option to conceive with their own eggs. The technology is surrounded by value-conflicts and is subject to ongoing discussions. This study aims at contributing to the empirical-ethical debate by exploring women’s viewpoints on egg freezing in Austria, where egg freezing for social reasons is currently not allowed. Methods Q-methodology was used to identify prevailing viewpoints on egg freezing. 46 female participants ranked a set of 40 statements onto a 9-column forced choice ranking grid according to the level of agreement. Participants were asked to explain their ranking in a follow-up survey. By-person factor analysis was used to identify distinct viewpoints which were interpreted using both the quantitative and the qualitative data. Results Three distinct viewpoints were identified: (1) “women should decide for themselves”, (2) “we should accept nature but change policy”, and (3) “we need an informed societal debate”. These viewpoints provide insights into how biomedical innovations such as egg freezing are perceived by women in Austria and illustrate the normative tensions regarding such innovations. Conclusions Acknowledging the different prioritizations of values regarding assisted reproductive technologies is important to better understand the underlying normative tensions in a country where egg freezing for social reasons is currently not allowed. The study adds new empirical insights to the ongoing debate by outlining and discussing viewpoints of those directly affected: women. Following up on the lay persons perspective is particularly important in the context of future biomedical innovations that may challenge established norms and create new tensions. It therefore also adds to the societal debate and supports evidence-informed policy making in that regard.