Improving access to human milk for vulnerable infants in resource-limited settings: an empirical ethics study

Following the WHO’s guidelines for optimal feeding of vulnerable infants, human milk banks (HMBs) have been developed to improve access to human milk for vulnerable infants and to ensure that milk is safely collected and stored, quality checked, and equitably distributed. While there are over 600 HMBs globally, very few are in sub-Saharan Africa, and there is limited evidence on the ethical issues surrounding the implementation of HMBs in resource-limited settings. Research is therefore needed to inform guidelines and subsequent policy development in the region. The main objective of my research was to examine the ethical issues involved in the implementation of HMBs in sub-Saharan African health systems and to consider how these issues might inform future ethics guidance and practice. To achieve this, I designed and conducted an empirical ethics case study around the first HMB in Kenya at the Pumwani Maternity Hospital in Nairobi; with additional insights from experts in the region. In a pilot phase, Pumwani HMB offered an opportunity to prospectively study ethical issues in practice. My empirical ethics methodology combines a case study approach with a literature review and ethical analysis. I conducted a scoping review of the literature on the ethics of HMBs globally. This was followed by case study work involving 75 hours of observations and informal conversations at Pumwani newborn unit, 25 in-depth interviews with health workers, managers and mothers, and one focus group discussion with a mothers’ support group. I also interviewed 10 expert stakeholders in Kenya and internationally. These conversations focused on perceptions and experiences of implementing and/or utilising an HMB, and recommendations for scale. I utilised framework and narrative approaches for data analysis. My study and ethical analysis were shaped by my literature review and the empirical data. I did not find ethics specific literature from the sub-Saharan Africa region. Available literature was mainly from North America, where ethical issues are likely to differ due to different disease profiles, and community and health systems contexts. The available ethics literature led me to conceptualise HMB as a complex intervention implemented in complex health systems. I developed and utilised a multilevel ethics framework, bringing together considerations from clinical, care, public health, implementation science, health systems and African ethics frameworks, mapped across socioecological domains. I utilised the framework to identify stakeholders, develop tools and to inform subsequent data analysis. Indeed, from the empirical study, the context within which the HMB was introduced was complex, as were the vulnerabilities of the mothers and babies meant to be served by the HMB. These complexities presented actors with ethical dilemmas and trade-offs to negotiate in everyday practice as well as in considerations about scaling access and sustaining the HMB. For example, there were many perceived benefits of access to human milk, such as, reduction in complications and prompt weight gain for babies. The HMB also offered an opportunity to provide structured lactation support for mothers. However, such benefits were accompanied by burdens to mothers, staff and the institution, such as difficult screening processes, significant increases in staff workload, and a need for institutional reorganisation. There were persisting concerns about sustainability of the HMB and calls for additional evidence, funding, and responsiveness to the sociocultural context to ensure that the intended benefits are realised, and unintended consequences minimised.