BackgroundThe banking of biological samples raises a number of ethical issues in relation to the storage, export and re-use of samples. Whilst there is a growing body of literature exploring participant perspectives in North America and Europe, hardly any studies have been reported in Africa. This is problematic in particular in light of the growing amount of research taking place in Africa, and with the rise of biobanking practices also on the African continent. In order to investigate the perspectives of African research participants, we conducted a study with research participants in a TB study in the Western Cape, South Africa.MethodsSemi-structured interviews were conducted using an interview guide which drew on the most prominent themes expressed in current literature on sample storage, re-use and exportation. Interviews were conducted in Afrikaans and subsequently translated into English by the same interviewer. Interviews were transcribed verbatim and analysed qualitatively.ResultsThe results of our study indicate that the majority of participants were supportive of giving one-time consent to the storage and re-use of their samples. The concept of research being for a “good cause” was a central prerequisite. Additionally, a significant minority requested that they be re-contacted if a future use was not stipulated on the original consent. There was also considerable variation in how participants understood the concept of a ‘good cause’, with participants describing three distinct categories of research, of which two were generally thought to constitute ‘good cause’ research. Research that was for-profit was considered to fall outside the spectrum of ‘good cause’ research. Participants displayed confidence in the abilities of the researchers to make future decisions regarding sample use, but seemed unaware of the role of ethics committees in either this process or more generally.ConclusionsParticipants expressed a wide and complex range of views about issues of sample storage and re-use, and they showed a great deal of trust in researchers. Participants’ willingness to have their samples stored and re-used is consistent with findings from existing studies. However, in contrast to existing literature, participants were generally not in favour of for-profit research. Further research needs to be done to explore these ideas in other communities, both in South Africa and other countries.
Youth with ASD are more likely to experience bullying than their typically developing peers. This risk has not been studied in youth with ASD transitioning to college. We examined the occurrence of bullying in 35 high functioning youth with ASD who were preparing to attend college. We also examined youth anxiety and ASD symptoms. Fifty-one percent of the sample reported being recent victims of bullying; 31% of parents reported their child was a victim of bullying. Parent report of bullying correlated significantly with ratings of youth social anxiety symptoms. These findings suggest that bullying is an issue of concern for higher functioning, older adolescents with ASD, and that their own reports may be particularly important in identifying its occurrence.
Dementia is an important cause of morbidity but is often neglected in primary care settings. This relates, in part, to perceived difficulties with diagnosis and the need to focus on more pressing physical complaints. Screening provides a potential first-step solution. Existing screening measures are regarded as either too time consuming or insufficiently sensitive and specific. The Test Your Memory (TYM) questionnaire was recently developed in response to this problem. Its utility as a cognitive screener has not been assessed in primary care settings. In this study, we measured and compared the performance of an adapted English as well as Afrikaans translation of the self-administered TYM to the Mini-Mental State Examination, the current accepted standard screening instrument for dementia, in 100 older primary care patients in South Africa. We found a strong positive correlation of total scores between the measures, with a higher internal consistency for the TYM. The TYM was also easily self-administered. Our results, in conjunction with previous validation findings and diagnostic accuracy for the TYM, suggest that it has clinical utility and potential as a cognitive screener in this context.
Oral fluid collected using either the GBO system or the Oral-Eze system cannot be used for quantitative clozapine and/or amisulpride therapeutic drug monitoring.
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