Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa: a meeting report

Genomic research and biobanking has undergone exponential growth in Africa and at the heart of this research is the sharing of biospecimens and associated clinical data amongst researchers in Africa and across the world. While this move towards open science is progressing, there has been a strengthening internationally of data protection regulations that seek to safeguard the rights of data subjects while promoting the movement of data for the benefit of research. In line with this global shift, many jurisdictions in Africa are introducing data protection regulations, but there has been limited consideration of the regulation of data sharing for genomic research and biobanking in Africa. South Africa (SA) is one country that has sought to regulate the international sharing of data and has enacted the Protection of Personal Information Act (POPIA) 2013 that will change the governance and regulation of data in SA, including health research data, once it is in force. To identify and discuss challenges and opportunities in the governance of data sharing for genomic and health research data in SA, a two-day meeting was convened in February 2019 in Cape Town, SA with over 30 participants with expertise in law, ethics, genomics and biobanking science, drawn from academia, industry, and government. This report sets out some of the key challenges identified during the workshop and the opportunities and limitations of the current regulatory framework in SA

The bii4africa dataset of faunal and floral population intactness estimates across Africa’s major land uses

Sub-Saharan Africa is under-represented in global biodiversity datasets, particularly regarding the impact of land use on species’ population abundances. Drawing on recent advances in expert elicitation to ensure data consistency, 200 experts were convened using a modified-Delphi process to estimate ‘intactness scores’: the remaining proportion of an ‘intact’ reference population of a species group in a particular land use, on a scale from 0 (no remaining individuals) to 1 (same abundance as the reference) and, in rare cases, to 2 (populations that thrive in human-modified landscapes). The resulting bii4africa dataset contains intactness scores representing terrestrial vertebrates (tetrapods: ±5,400 amphibians, reptiles, birds, mammals) and vascular plants (±45,000 forbs, graminoids, trees, shrubs) in sub-Saharan Africa across the region’s major land uses (urban, cropland, rangeland, plantation, protected, etc.) and intensities (e.g., large-scale vs smallholder cropland). This dataset was co-produced as part of the Biodiversity Intactness Index for Africa Project. Additional uses include assessing ecosystem condition; rectifying geographic/ taxonomic biases in global biodiversity indicators and maps; and informing the Red List of Ecosystems

View from the village : changing settlement patterns in Sisalaland, Northern Ghana

No abstract available

Too much power is not good : War and trade in nineteenth-century Sisalaland, northern Ghana

Recently, there has been renewed interest in tracing the history of change in the social and political institutions of what are called \u27decentralised\u27 or \u27stateless\u27 societies over the last five hundred years, a period that saw widespread changes in economic and social relations and the emergence of global-scale inequality and hierarchy. Rather than privileging these large-scale processes, however, recent work in ethnohistory and history has focused on delineating change as experienced at the local level. This dissertation is an investigation of such local level change as it occurred in Sisalaland, northern Ghana, an area inhabited by \u27decentralised\u27 societies that was heavily impacted by slave-raiding in the latter part of the nineteenth century. This is achieved through an historical archaeological study of the fortified hilltop settlement, Yalingbong , that was occupied during the nineteenth century and the early colonial era (twentieth century) site of Zanbulugu . More specifically, changes in settlement organization, ritual organisation, warfare and defense, and trade patterns that are found in connection with the rise to power of \u27big men,\u27 co-incident with increased warfare and slave-raiding in the period post-dating the end of the trans-Atlantic slave trade, are documented. Drawing on archaeological, oral historical and documentary sources it is demonstrated how the patterning of trade and warfare in nineteenth century Sisalaland was related not only to external relations but also how it served to both reinforce and/or transform the internal structure and practice of social and political relationships and community life

Identifying Hearing Loss By Means Of Iridology

Isolated reports of hearing loss presenting as markings on the iris exist, but to date the effectiveness of iridology to identify hearing loss has not been investigated. This study therefore aimed to determine the efficacy of iridological analysis in the identification of moderate to profound sensorineural hearing loss in adolescents. A controlled trial was conducted with an iridologist, blind to the actual hearing status of participants, analyzing the irises of participants with and without hearing loss. Fifty hearing impaired and fifty normal hearing subjects, between the ages of 15 and 19 years, controlled for gender, participated in the study. An experienced iridologist analyzed the randomised set of participants&apos; irises. A 70% correct identification of hearing status was obtained by iridological analyses with a false negative rate of 41% compared to a 19% false positive rate. The respective sensitivity and specificity rates therefore came to 59% and 81%. Iridological analysis of hearing status indicated a statistically significant relationship to actual hearing status (P < 0.05). Although statistically significant sensitivity and specificity rates for identifying hearing loss by iridology were not comparable to those of traditional audiological screening procedures

Identifying Hearing Loss by Means of Iridology

Isolated reports of hearing loss presenting as markings on the iris exist, but to date the effectiveness of iridology to identify hearing loss has not been investigated. This study therefore aimed to determine the efficacy of iridological analysis in the identification of moderate to profound sensorineural hearing loss in adolescents. A controlled trial was conducted with an iridologist, blind to the actual hearing status of participants, analyzing the irises of participants with and without hearing loss. Fifty hearing impaired and fifty normal hearing subjects, between the ages of 15 and 19 years, controlled for gender, participated in the study. An experienced iridologist analyzed the randomised set of participants' irises. A 70% correct identification of hearing status was obtained by iridological analyses with a false negative rate of 41% compared to a 19% false positive rate. The respective sensitivity and specificity rates therefore came to 59% and 81%. Iridological analysis of hearing status indicated a statistically significant relationship to actual hearing status (P < 0.05). Although statistically significant sensitivity and specificity rates for identifying hearing loss by iridology were not comparable to those of traditional audiological screening procedures

Editorial : Mapungubwe matters

No abstract available

Identifying hearing loss by means of iridology

Isolated reports of hearing loss presenting as markings on the iris exist, but to date the effectiveness of iridology to identify hearing loss has not been investigated. This study therefore aimed to determine the efficacy of iridological analysis in the identification of moderate to profound sensorineural hearing loss in adolescents. A controlled trial was conducted with an iridologist, blind to the actual hearing status of participants, analyzing the irises of participants with and without hearing loss. Fifty hearing impaired and fifty normal hearing subjects, between the ages of 15 and 19 years, controlled for gender, participated in the study. An experienced iridologist analyzed the randomised set of participants’ irises. A 70% correct identification of hearing status was obtained by iridological analyses with a false negative rate of 41% compared to a 19% false positive rate. The respective sensitivity and specificity rates therefore came to 59% and 81%. Iridological analysis of hearing status indicated a statistically significant relationship to actual hearing status (P < 0.05). Although statistically significant sensitivity and specificity rates for identifying hearing loss by iridology were not comparable to those of traditional audiological screening procedures

Self-reported outcomes of aural rehabilitation for adult hearing aid users in a developing South African context

Hearing impairment has far reaching consequences for affected individuals, in terms of quality of life indicators. In a developing South African context the hearing impaired population is faced with limited aural rehabilitation services. This study evaluated self-reported outcomes of aural rehabilitation in a group of adults in the public healthcare sector with a standardized outcomes measurement tool (IOI-HA). Sixty-one respondents participated (44% males; 56% females), with a mean age of 69.7 years. Results revealed that the majority of respondents experienced favourable outcomes in all domains of the inventory comprising of: daily use of hearing aids, benefits provided by hearing aids, residual activity limitation, satisfaction with hearing aids, residual participation restriction, impact of hearing difficulties on others, and changes in quality of life. Statistically significant relationships were obtained between the daily use of hearing aids, the degree of hearing loss, and the type of hearing aids fitted, as well as the benefits received from hearing aids in difficult listening environments (p < 0.05). Despite challenges of developing contexts, the mean scores distribution compared positively to similar reports from developed countries. Outcomes of improved quality of life emphasize the importance of providing affordable hearing aids and services to all hearing impaired individuals in South Africa

Self-reported outcomes of aural rehabilitation for adult hearing aid users in a South African context

Hearing impairment has far-reaching consequences for affected individuals, in terms of quality of life indicators. In the public health care sector of South Africa the hearing-impaired population is faced with limited aural rehabilitation services. This study evaluated self-reported outcomes of aural rehabilitation in a group of adults in the public health care sector with a standardised outcomes measurement tool (IOI-HA). Sixty-one participants were included (44% male; sample mean age 69.7 years) through face-to-face or telephonic interviews. Results revealed that the average perceived outcome of participants (5 = best outcome; 1 = poorest outcome) was positive across all domains of the inventory including daily use of hearing aids (4.3); benefits provided by hearing aids (4.3); residual activity limitation (3.9); satisfaction with hearing aids (4.5); residual participation restriction (4.0); impact of hearing difficulties on others (4.6); and changes in quality of life (4.5). Statistically significant relationships for daily use of hearing aids, degree of hearing loss, type of hearing aids fitted, and the perceived benefit from hearing aids in difficult listening environments (p<0.05) were evident. Adult aural rehabilitation for hearing loss in a public health care facility, even without optimal hearing aid fittings, was effective in providing positive perceived outcomes comparable to similar studies in developed countries. The findings advocate for the initiation of affordable and sustainable aural rehabilitation services in developing countries despite apparent resource limitations