Abstract
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.
| Original language | English |
|---|---|
| Article number | S6 |
| Journal | BMC Pregnancy and Childbirth |
| Volume | 10 |
| Issue number | SUPPL. 1 |
| DOIs | |
| Publication status | Published - Feb 23 2010 |
Bibliographical note
Funding Information:This report was supported by the Global Alliance to Prevent Prematurity and Stillbirth, an initiative of Seattle Children’s, through a grant from the Bill & Melinda Gates Foundation. Additional research support came from the Treuman Katz Center for Pediatric Bioethics. We would like to thank the members of the Ethics and Social Justice Work Group from the May 2009 International Conference on the Global Prevention of Prematurity and Stillbirth for a lively discussion on these and other ethical issues. The workgroup included: Richard Cash, Lynn Freedman, Amelia Gavin, Alice Hazemba, Calvin Ho, Dean Jamison, Amar Jesani, Raman Kutty, Reidar Lie, Paul Ndebele, Mala Ramanathan, Alina Rodriguez, Dan Wikler, Paul Wise, and Xiaomei Zhai. We are also grateful for the response from the scientific participants at the conference who contributed ethics cases for consideration. Finally, we would like to extend special thanks to Cesar Victora, Jim Litch, Ben Wilfond, and Dan Wikler for their patient, wise, and extremely helpful input on earlier drafts, and to Kaiti Carpenter and Toni Nunes for their excellent research and editorial support. We also thank Catherine Waszak for her administrative support.
Funding
This report was supported by the Global Alliance to Prevent Prematurity and Stillbirth, an initiative of Seattle Children’s, through a grant from the Bill & Melinda Gates Foundation. Additional research support came from the Treuman Katz Center for Pediatric Bioethics. We would like to thank the members of the Ethics and Social Justice Work Group from the May 2009 International Conference on the Global Prevention of Prematurity and Stillbirth for a lively discussion on these and other ethical issues. The workgroup included: Richard Cash, Lynn Freedman, Amelia Gavin, Alice Hazemba, Calvin Ho, Dean Jamison, Amar Jesani, Raman Kutty, Reidar Lie, Paul Ndebele, Mala Ramanathan, Alina Rodriguez, Dan Wikler, Paul Wise, and Xiaomei Zhai. We are also grateful for the response from the scientific participants at the conference who contributed ethics cases for consideration. Finally, we would like to extend special thanks to Cesar Victora, Jim Litch, Ben Wilfond, and Dan Wikler for their patient, wise, and extremely helpful input on earlier drafts, and to Kaiti Carpenter and Toni Nunes for their excellent research and editorial support. We also thank Catherine Waszak for her administrative support.
| Funders | Funder number |
|---|---|
| Bill and Melinda Gates Foundation |
ASJC Scopus Subject Areas
- Obstetrics and Gynaecology
