Community engagement in genetics and genomics research: a qualitative study of the perspectives of genetics and genomics researchers in Uganda.

BACKGROUND: Generally, there is unanimity about the value of community engagement in health-related research. There is also a growing tendency to view genetics and genomics research (GGR) as a special category of research, the conduct of which including community engagement (CE) as needing additional caution. One of the motivations of this study was to establish how differently if at all, we should think about CE in GGR. AIM: To assess the perspectives of genetics and genomics researchers in Uganda on CE in GGR. METHOD: A cross-sectional qualitative study was conducted at Makerere University and Uganda Virus Research Institute. Twenty-five individuals participated, the majority being male (sixteen). Participants included nineteen genetics and genomics researchers (researchers and research coordinators), two CE officers, three nurses and one nursing counsellor. Data were collected using in-depth interviews and analyzed in a thematic manner using NVivo version 12 Plus. STUDY FINDINGS: Thirteen of the respondents had conducted CE in their GGR in either a geographical and disease-specific community. Some respondents said CE principles are the same and there is no need for special consideration for CE in GGR. Others gave ethical issues in GGR that require special consideration for CE in such research and these were categorized into six themes: GGR is new to communities, Difficulty in communicating GGR by the researchers, Genes are shared in communities, Cultural sensitivities against GGR, Community attitude toward GGR, Some GGR studies take long to end, and Negotiation of research benefits. Special considerations for CE when conducting GGR were suggested and categorized into seven themes: creating awareness of GGR in communities, obtaining both community acceptance and individual consent, CE team composition, involve communities in solving GGR challenges, prolong CE in some GGR, develop guidelines for CE in GGR, and legal considerations on GGR. CONCLUSION: GGR was characterized by special issues that require special CE considerations for such research.

Realization of the right to adequate food and the nutritional status of land evictees: a case for mothers/caregivers and their children in rural Central Uganda.

BACKGROUND: In developing countries like Uganda, the human right to adequate food (RtAF) is inextricably linked to access to land for households to feed themselves directly through production or means for its procurement. Whether RtAF is enjoyed among Ugandan land evictees, is unknown. We therefore explored this among land evictees (rights-holders) in Wakiso and Mpigi districts in rural Central Uganda. We assessed food accessibility and related coping strategies, diet quality and nutritional status of children 6-59 months old, and their caregivers. Effectiveness of the complaint and redress mechanisms in addressing RtAF violations was also explored. METHODS: In this cross-sectional study, quantitative data was collected using a structured questionnaire, with food security and nutritional assessment methods from a total of 215 land evictees including 187 children aged 6-59 months. Qualitative data was collected by reviewing selected national and international documents on the RtAF and key informant interviews with 15 purposively sampled duty-bearers. These included individuals or representatives of the Uganda Human Rights Commission, Resident District Commissioner, Sub-county Chiefs, and local Council leaders. RESULTS: We found that 78% of land evictees had insufficient access to food while 69.4% had consumed a less diversified diet. A majority of evictees (85.2%) relied on borrowing food or help from others to cope with food shortages. Of the 187 children assessed, 9.6% were wasted, 18.2% were underweight and 34.2% were stunted. Small, but significant associations, were found between food accessibility, diet quality, food insecurity coping strategies; and the nutritional status of evictees. We observed that administrative, quasi-judicial and judicial mechanisms to provide adequate legal remedies regarding violations of the RtAF among evictees in Uganda are in place, but not effective in doing so. CONCLUSION: Land eviction without adequate legal remedies is a contributor to food insecurity and undernutrition in rural Central Uganda. It is essential that the Government strengthens and enforces the policy and legal environment to ensure adequate and timely compensation of evictees in order to reduce their vulnerability to food insecurity.