Table 11 Ethics and Social Justice
Overarching Goal: To help inform an ethically responsible and culturally appropriate response to the global burden of preterm and stillbirth | |||||
|---|---|---|---|---|---|
| Â | Milestones* | Â | |||
Output | Post-Conference (by 2010) | Short-Term (by 2012) | Intermediate (by 2015) | Long-Term (beyond 2015) | Success Metrics |
A. Identify the range of ethical or social justice considerations that arise along the research pathway, from definitions to discovery, development and delivery | 1. Establish standing working group on ESJ in preterm birth and stillbirth 2. Publish "Points to Consider," reflecting the most pressing ethical considerations identified by the work group, across the research pathway | 3. Publish special issue of Indian Journal of Medical Ethics devoted to ethical issues in prematurity and stillbirth, from Indian perspectives | 4. Identify an appropriate journal to publish African perspectives on ethical issues in prematurity and stillbirth (possibly Developing World Bioethics) |  | • Increased awareness and discussion of the ethics and social justice issues as evidenced by inclusion in peer-reviewed journals |
B. Engage scientists and key stakeholders regarding the ethical and social justice considerations identified above | 1. Invite scientists and other stakeholders involved in the conference to submit ethical issues encountered in the field | 2. Identify scientific and professional conferences to present papers and panels on ethical issues surrounding preterm and stillbirth (e.g., PAS and Global Forum) |  |  | • Increased dialogue among scientists and bioethics of the ethics and social justice issues as evidenced by inclusion in scientific conferences |
C. Set a research agenda to address gaps in ethical guidance, policy, and cross- cultural understanding of the ethical issues surrounding the global burden of prematurity and stillbirth | 1. ESJ work group to identify a list of priority normative and empirical research questions surrounding the ethical and cross-cultural issues in preterm and stillbirth 2. Submit panel proposal to the 2010 World Congress in Bioethics, devoted to papers on "ethical considerations in the global burden of prematurity and stillbirth" | 3. Treuman Katz Center for Pediatric Bioethics July 2010 to devote annual conference to'Ethical Issues at the Beginning of Life: Prematurity and Neonatology" 4. Seek funding for satellite meeting to reconvene the ESJ workgroup in July 2010 5. Seek funding to support empirical studies in India and Zambia on cross-cultural experiences of women surrounding preterm and stillbirth 6. Commission law review article to conduct a health and human rights analysis of reproductive decision-making surrounding preterm birth and stillbirth measurement 7. Facilitate the development of better measurements for stillbirth within the global burden of disease that address ethical concerns regarding stillbirth measurements | 8. Identify additional country sites to conduct empirical studies on cross-cultural experiences of preterm and stillbirth, as well as additional factors identified in previous studies |  | • Improved understanding of the ethical, social, political, and cross- cultural ethical issues surrounding preterm birth and stillbirth, demonstrated in both normative and empirical research findings |