Exploring Black Women’s Pathways to Motherhood Within a Reproductive Justice Framework

Amidst the increasing push to address racial disparities in maternal health equity, fewer studies have considered Black women’s perspectives on their needs, concerns, and priorities regarding family planning care. Such evidence might help address the lack of support and information that many Black women report in patient–provider encounters, and broaden empirical knowledge on the contextual factors that influence Black women’s reproductive decisions. In the present qualitative study, we explored Black women’s pathways to motherhood within a reproductive justice framework. We drew on individual, semi-structured interview data from 31 Black mothers (25–50 years, Mage = 35 years) across the United States. Using consensual qualitative research methods, we elaborated on three themes: (1) intentional family planning, (2) unintended pregnancy, and (3) othermothering. The findings challenge deficit-based stereotypes of Black mothers’ reproductive choices and illuminate how health practitioners can facilitate humanizing conversations that prioritize Black women’s family planning goals and decision-making.

Reproduction and Genetic Responsibility: An Interpretive Description of Reproductive Decision-Making for Young People With Li-Fraumeni Syndrome

The reproductive decision-making of young people (aged 15–39 years) with Li-Fraumeni syndrome (LFS), an early onset inherited cancer syndrome, has not been studied in depth. Using interpretive description methodology, we conducted semi-structured interviews with 30 young Australians (mean age 25.5 years) diagnosed with LFS or at 50% genetic risk. With reflexive thematic analysis, we show how young people’s reproductive decision-making and ideals for family formation were shaped by a sense of genetic responsibility to ensure the health of future biological kin. Reproductive technology provided choices for family formation in the context of LFS and also complicated reproductive decisions, as these choices were difficult to understand, make, or carry out. We uphold that reproductive decision-making when living with LFS is a profoundly moral practice that may pose significant challenges for young people navigating their formative years. We offer genetic counseling practice recommendations to support individuals with LFS when making reproductive decisions.

Power Relations in Reproductive Decisions Under the Transforming Family Planning Policy in China

China’s family planning policy has had a profound influence on individuals and families for the past 30 years. The universal two-child policy implemented in 2016 is its most relaxed form. The consequences of the policy transitions are worthwhile to explore . By interviewing 26 middle class mothers who gave birth to a second child during the policy transformation, we consider women’s accounts of their reproductive decisions-making processes. We found that the participants exerted strong agency in their reproductive decisions, but meanwhile they were reproducers and embodiments of traditional culture, population policies and patriarchal power. They internalised various modes of power that dictate how women should regulate their bodies, reflecting the mechanisms of self-governance. Self-governance functions as a subtle technique of conflict avoidance through which explicit conflicts are dissolved and transformed into intrapersonal self-adjustment and personal struggle. Our research broadens the conceptualisation of self-governance by incorporating relational dynamics using evidence from China.

Updating the Genetic Landscape of Inherited Retinal Dystrophies

Inherited retinal dystrophies (IRD) are a group of diseases characterized by the loss or dysfunction of photoreceptors and a high genetic and clinical heterogeneity. Currently, over 270 genes have been associated with IRD which makes genetic diagnosis very difficult. The recent advent of next generation sequencing has greatly facilitated the diagnostic process, enabling to provide the patients with accurate genetic counseling in some cases. We studied 92 patients who were clinically diagnosed with IRD with two different custom panels. In total, we resolved 53 patients (57.6%); in 12 patients (13%), we found only one mutation in a gene with a known autosomal recessive pattern of inheritance; and 27 patients (29.3%) remained unsolved. We identified 120 pathogenic or likely pathogenic variants; 30 of them were novel. Among the cone-rod dystrophy patients, ABCA4 was the most common mutated gene, meanwhile, USH2A was the most prevalent among the retinitis pigmentosa patients. Interestingly, 10 families carried pathogenic variants in more than one IRD gene, and we identified two deep-intronic variants previously described as pathogenic in ABCA4 and CEP290. In conclusion, the IRD study through custom panel sequencing demonstrates its efficacy for genetic diagnosis, as well as the importance of including deep-intronic regions in their design. This genetic diagnosis will allow patients to make accurate reproductive decisions, enroll in gene-based clinical trials, and benefit from future gene-based treatments.

Reproductive carrier screening: responding to the eugenics critique

Reproductive genetic carrier screening (RCS), when offered to anyone regardless of their family history or ancestry, has been subject to the critique that it is a form of eugenics. Eugenics describes a range of practices that seek to use the science of heredity to improve the genetic composition of a population group. The term is associated with a range of unethical programmes that were taken up in various countries during the 20th century. Contemporary practice in medical genetics has, understandably, distanced itself from such programmes. However, as RCS becomes more widespread, gains public funding and uses expanded gene panels, there are concerns that such programmes could be perceived as eugenic either in intent or outcome. The typical response to the eugenics critique of RCS is to emphasise the voluntary nature of both participating in screening and making subsequent reproductive choices. While safeguarding individuals’ freedom to choose in relation to screening is essential, we consider this response inadequate. By examining the specific ethical wrongs committed by eugenics in the past, we argue that to avoid the perception of RCS being a form of eugenics it is essential to attend to the broader normative context in which reproductive decisions occur. Furthermore, ethical RCS programmes must recognise and respond to their potential to shift societal norms that shape individual reproductive choices.

O-188 Participation in a video-based fertility awareness program advances the desire to have children sooner

Study question Participating in a fertility awareness program accelerates the intention to have children 6 to 12 months after video- fertility awareness? Summary answer In combination with positive childbearing motivation, those in the video condition anticipated their intentions to have children at 6-12 months follow-up What is known already Fertility awareness education and initiatives have been focused on increasing fertility awareness and knowledge. However, the role of fertility awareness on reproductive decisions is less explored in literature. There are few studies showing that participating in fertility awareness education is related to higher intentions to have children or decreased time until trying to conceive regarding beforehand planned. Since intentions seem to be a good predictor of behaviour, we were interested in exploring the variables which might predict higher intentions to have children after participating in a fertility awareness education study based on a video intervention Study design, size, duration This study is part of a randomised controlled trial initiated in October 2016. Participants were randomly allocated into the intervention (IG) and control group (CG) at baseline (TO). The follow-up was evaluated 6 to 12 months later. IG participants were exposed to a 5-min video delivering information on age-related fertility decline, infertility risk factors, and pregnancy chances after having filled-in the T0 questionnaire: Participants in CG received no stimulus. Participants/materials, setting, methods Three hundred sixty-five individuals (65% women) were recruited through social media, gynaecology clinics, and religious pre-marital courses. From those, 128 responded to follow-up (between 6 and 12 months). Childbearing Motivation Scale (positive and negative) and a question about childbearing timing intentions were used. Regression analysis was conducted to explore the role of video intervention and childbearing motivation on childbearing timing intention. Main results and the role of chance Participants were, on average, 29.5 years old (SD = 5.13). From baseline to 6-12 months later, participants significantly anticipated their desire to have children (p<.005). Correlations showed that childbearing timing intention was positively and significantly associated with the following subscales of the positive motivations: personal fulfilment, continuity, and couple relationship; negative motivations were not associated with the childbearing timing intention. The regression analysis revealed that only the childbearing motivation regarding couple relationship (having a child would strengthening partnership ties, fulfilling partner’s project, growing as a couple, fulfilling a shared project) and the visualization of the educational video significantly contributed to predicting at follow-up the increased desire to have children sooner at follow-up. Limitations, reasons for caution Other factors, not considered, might contribute to the prediction of childbearing motivation timing. Although we had randomly allocated people to CG and IG, the high attrition rate may limit the generalization of our results. Wider implications of the findings This study seems to indicate that watching an educational video about fertility awareness might contribute to a significant change in childbearing timing. In addition, the importance of the couple relationship is highlighted. These findings reinforce the importance to assist people with informed reproductive decisions in social and healthcare settings. Trial registration number NCT02813993

Researching relationality: Reflections on the use of concept cards during in-depth interviews

This article reflects on the use of concept cards during in-depth interviews when researching reproductive decision-making in the context of neoliberalism and postfeminism. As existing literature has shown, card methods are valuable in centring participants’ individual experiences through increased control and inclusion during data collection, and attention has been drawn to their use as an ethically attentive method that can elicit richer, more complex narratives than interviews alone. While these strengths initially led me to consider the cards as an appropriate ‘fit’ with my feminist methodological approach, on reflection, the cards also illuminated the relationality of experiences that my research was concerned with. I view this as occurring in two ways. First, participants’ use of the cards helped to uncover the intertwining of their reproductive decisions with the social and political world, therefore complicating the neoliberal prioritization of the individual. Second, the cards brought the relation between myself and the participants, and between the participants, to the forefront. The reflections in this article therefore offer new insights into what concept cards can achieve, as not only validating individual accounts, but as enhancing the relationality of knowledge production.

The Inadequacy of “Choice”

This chapter examines the limitations of feminist discussions about disability and reproduction. Feminism and disability rights often hold different places in reproductive justice discussions. Feminism often oversimplifies the idea of reproductive choice, focusing on individual women and endorsing cultural stereotypes of disability. As a counterpoint to the scholarly literature of these issues, Alison Piepmeier interviewed twenty-nine parents of children with Down syndrome, asking them about their pregnancy, prenatal testing, and their families. The responses of these parents illustrate how families need more support than just individual rights to raise a child with a disability. Although reproductive decisions may rest on an individual woman, she must also consider community support and health services in her decision to raise a child, particularly one with a disability.

Who Is Responsible for Abortions?

The falling birth rate in 1948 became a political problem, and all demographic data were made secret thereafter. V. N. Starovskii, the head of the Central Statistical Administration, suggested that the rising number of illegal abortions was the primary cause of the declining birth rate. Saddled with this allegation, the medical and legal professions undertook comprehensive study of both legal and illegal abortion, including a survey of illegal abortion, compiled through interviews with hundreds of women hospitalized after botched abortions. The results led to a shift in reformist focus from prosecution to prevention, and a new understanding of the causes underlying Soviet women’s reproductive decisions.