Ethics & Engagement across the Wellcome Trust Major Overseas Programmes

The Social and Ethical Implications of Data-prompted Ancillary Care referral in LMICs

Blessings is a GHBN PhD Fellow, 2019-2022

Blessings is currently a PhD student at London School of Hygiene & Tropical Medicine. Recently, he was involved in a qualitative study that examined the views and opinions of stakeholders about the conduct of Human Infection Studies research in Malawi. These consultations aimed to establish the ethical acceptability of Human Infection studies in Malawi. The manuscript from this study has been submitted to BMC Medical Ethics for publication. Blessings possesses a MSc degree in International Health awarded by the University of Leeds and a BSc degree in Nursing from the University of Malawi. His work interests focus on exploring health perceptions and behaviours for improving health, and supporting ethical conduct of biomedical research in LMICs.

Project Summary
The provision of ‘ancillary care’ is sometimes proposed as an important way in which global health researchers can meet their ethical responsibilities to the communities in which they conduct their research. This concept has been proposed by numerous scholars, who have grounded the obligation in different principles and has resulted in models of ancillary care that address the scope and limitations of the obligation in different ways. These scholars have proposed models for identifying ancillary care obligations that draw on assessments of urgency, the researcher’s fiduciary duty to research participants, the capacity of the local healthcare infrastructure and the capacity of the research infrastructure. However, this moral obligation of providing ancillary care raises complex ethical issues in health research in LMICs due to the severe burden of diseases and complex costly treatment. Apparently, researchers may also be uncertain how to respond to ancillary care needs, particularly where there is no local care available, or care is only available privately and/or in some distant facility. Even where services do exist, the recommendation that ancillary care be provided through the local health care services can place a burden on local health facilities. Some scholars have argued that provision of ancillary care maybe considered as undue inducement (access to better healthcare may be the factor that persuades a person to participate in health research) to some extent.

Presently, there is a lack of guidelines on how ancillary care should be provided in health research in LMICs. There is insufficient empirical work done to draw any conclusions about which model best reflects how researchers make decisions about what ancillary care to provide in practice. This PhD project will investigate the existing practices and the associated social and ethical implications of the provision of ancillary care in sub-Saharan Africa, particularly Malawi and South Africa. Further considerations are on how the provision of ancillary care has impacted on the health care system. Results from this project will contribute to the development of recommendations for how best care may be provided.

This PhD project will use qualitative approaches to explore experiences and perspectives of participants and stakeholders on the provision of ancillary care in Malawi and South Africa. Data collection will be conducted using face to face key informant interviews with different categories of key stakeholders, for example, officials from the Department of Health and members of regulatory bodies, research teams, health workers in clinics associated with research projects but not necessarily part of the research team, and local community representatives including selected research participants, chosen at random from those who participated in recent research projects associated with Africa Health Research Institute (AHRI) and Malawi-Liverpool Wellcome Trust Clinical Research Programme (MLW).

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