Global report on preterm birth and stillbirth (6 of 7): ethical considerations

Abstract

IntroductionDespite the substantial global burden of preterm and stillbirth, little attention has been given to the ethical considerations related to research and interventions in the global context. Ethical dilemmas surrounding reproductive decisions and the care of preterm newborns impact the delivery of interventions, and are not well understood in low-resource settings. Issues such as how to address the moral and cultural attitudes surrounding stillbirths, have cross-cutting implications for global visibility of the disease burden. This analysis identifies ethical issues impacting definitions, discovery, development, and delivery of effective interventions to decrease the global burden of preterm birth and stillbirth.MethodsThis review is based on a comprehensive literature review; an ethical analysis of other articles within this global report; and discussions with GAPPS's Scientific Advisory Council, team of international investigators, and a community of international experts on maternal, newborn, and child health and bioethics from the 2009 International Conference on Prematurity and Stillbirth. The literature review includes articles in PubMed, Academic Search Complete (EBSCO), and Philosopher's Index with a range of 1995-2008.ResultsAdvancements in discovery science relating to preterm birth and stillbirth require careful consideration in the design and use of repositories containing maternal specimens and data. Equally important is the need to improve clinical translation from basic science research to delivery of interventions, and to ensure global needs inform discovery science agenda-setting. Ethical issues in the development of interventions include a need to balance immediate versus long-term impacts—such as caring for preterm newborns rather than preventing preterm births. The delivery of interventions must address: women's health disparities as determinants of preterm birth and stillbirth; improving measurements of impact on equity in coverage; balancing maternal and newborn outcomes in choosing interventions; and understanding the personal and cross-cultural experiences of preterm birth and stillbirth among women, families and communities.ConclusionEfforts to improve visibility, funding, research and the successful delivery of interventions for preterm birth and stillbirth face a number of ethical concerns. Thoughtful input from those in health policy, bioethics and international research ethics helped shape an interdisciplinary global action agenda to prevent preterm birth and stillbirth.

Grief and Women: Stillbirth in the Social Context of India

“…The fusion of anticipated birth with despair because of perinatal loss in a moment in time produces unique grief; perinatal grief is like no other grief (Kelly, 2007; Rowland & Goodnight, 2009). Perinatal grief, however, is not universally recognized (Mammen, 1995) and little is known about low-resource countries with respect to women's perceptions of stillbirth and how they cope with the loss (Haws et al, 2010; Kelley & Rubens, 2010; van der Sijpt, 2010). Perinatal grief is not recognized as an issue by the Indian medical community (Mammen, 1995; Mehta & Verma, 1990)—in one of four highly populated countries where more than half of all known stillbirths occur (Stanton, Lawn, Rahman, Wilczynska-Ketende, & Hill, 2006).…”

Social and Cultural Factors Associated with Perinatal Grief in Chhattisgarh, India

“…In the West, predictors of perinatal grief include maternal coping style [21] and social support [22]. Outside of Western countries, however, little is known about how women perceive the experience of stillbirth, and what factors may inhibit or enhance their ability to cope with the loss [23]. …”

Taiwanese Women's Process of Recovery From Stillbirth: A Qualitative Descriptive Study

“…Little is known about how women in non-Western countries experience stillbirth or the factors that promote or inhibit their ability to adapt to this loss (Hsu, Tseng, & Kuo, 2002;Kelley & Rubens, 2010). Thus, the purpose of this qualitative descriptive study was to understand experiences of Taiwanese women who had given birth to stillborn babies within that country's unique sociocultural context.…”