Table 1 Research questions: ethics and social justice

Definitions and Measurement

Visibility:Global Burden Measurement Health Reporting & Data Collection

• To what degree are critical scientific definitions and classification surrounding preterm birth and stillbirth shaped by social and moral norms, and how do controversies over definitions affect visibility of the disease burden?

• What are the psychological, social and economic costs associated with increased rates of prematurity in both HICs and LMICs?

• How can we expand and improve global measures of stillbirth while avoiding implications for the abortion controversy?

Discovery Science

Research Ethics Community Engagement Improving Translation

• Are there additional ethical issues to consider in the design of biorepositories for the study of preterm birth, and how should these issues be addressed? For example, what are the attitudes and expectations of women who donate to biorepositories for the study of preterm birth and stillbirth?

• What are the risks for stigmatization surrounding research on infection and preterm birth in vulnerable populations or marginalized communities? What is the potential ethical and social impact of the microbiome model of infection in the context of preterm birth?

• What are the barriers to effective translation between discovery science research on preterm birth and stillbirth and the needs of women and families in LMICs?

• To what extent can the prevalence of preterm birth or stillbirth be attributed to issues of racial, gender, or economic disparities and how can we target these systematic or structural causes?

Interventions

Expanding Outcomes Measures Socioeconomic Determinants Research Ethics

• What is the impact of maternal socioeconomic status on long-term outcomes for preterm births?

• Can we estimate the family and social burden of improving preterm survival, a certain proportion of whom may go on to have significant problems?

• How should these data inform intervention strategies?

• What is the subjective experience of disability among preterm birth survivors (accounting for variation across socioeconomic status, culture, lifespan, and parental vs. provider perceptions)?

• In the design of ethical neonatal intervention trials in developing countries, how can we avoid moral "double standards" in our choice of baseline interventions or control groups, while recognizing real limits to the resources available in low income settings?

Delivery of Interventions

Medical Decision-Making Women's Health Cross-Cultural Experience Health Equity

• In HICs, how should we balance women's reproductive choices and parental discretion against the impact and costs of preterm birth associated with the use of reproductive technology and fertility treatment?

• What ethical dilemmas and value trade-offs do mothers, parents, families, and providers face during pregnancy and with preterm survivors, in settings where women and families lack economic or social safety nets?

• What are the cross-cultural attitudes and perceptions regarding preterm births, stillbirths, and associated interventions, and how might these beliefs impact the acceptability of new approaches and treatments within a culture?

• Can we identify better strategies and ethical guidance for balancing the implementation of short-term interventions while working toward more ideal, longer-term solutions in both maternal and newborn interventions?

• How can we improve and further specify instruments for measuring impact on equity in preterm birth and stillbirth interventions?