Global report on preterm birth and stillbirth (6 of 7): ethical considerations
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INTRODUCTION: Despite 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. METHODS: This 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. RESULTS: Advancements 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. CONCLUSION: Efforts 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.
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The metaphor of taking that first breath in the world carries strong moral significance for many people even though, at the end of gestational development, such a cutoff makes little sense medically and is essentially arbitrary.
“The metaphor of taking that first breath in the world carries strong moral significance for many people even though, at the end of gestational development, such a cutoff makes little sense medically and is essentially arbitrary [47].”
From Silent loss and the clinical encounter: Parents’ and physicians’ experiences of stillbirth–a qualitative analysis (2012) · cites this paper as [47]
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- Authors
- the GAPPS Review Group, Kelley, M., & Rubens, C. E.
- Affiliations
- Seattle Children's Hospital (US)
- University of Washington (US)
- Corresponding author
- Kelley, Maureen
- ORCID
- Kelley, Maureen
- Venue
- BMC Pregnancy and Childbirth
- Published
- 2010-02
- Volume
- 10
- Issue
- S1
- Pages
- S6-S6
- ISSN
- 1471-2393 (ISSN-L)
- PMC
- PMC2841776
- OpenAlex
- W2105640619
- Cited by
- 60
- References
- 94
- Citations by year
- 2026: 1 · 2025: 1 · 2024: 1 · 2022: 1 · 2021: 4 · 2020: 5 · 2019: 3 · 2018: 3 · 2017: 5 · 2016: 4 · 2015: 5 · 2014: 8 · 2013: 4 · 2012: 2
- FWCI
- 0.89
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- BMC Pregnancy and Childbirth (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- LSHTM Research Online (London School of Hygiene and Tropical Medicine) (acceptedVersion)
- National University of Singapore (submittedVersion, cc-by)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Spiral (Imperial College London) (submittedVersion, other-oa)
- Funders
- Bill and Melinda Gates Foundation
- Treuman Katz Center for Pediatric Bioethics
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Global Maternal and Child Health
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Keywords
- preterm birth, stillbirth, research ethics, bioethics, clinical translation, health disparities, maternal and neonatal outcomes, resource-limited settings
- MeSH terms
- Data Collection, Developing Countries, Ethics, Female, Fetal Death, Health Services Accessibility, Humans, Infant, Newborn, Pregnancy, Prenatal Care, Socioeconomic Factors, Biomedical Research, Premature Birth, Stillbirth, Healthcare Disparities
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