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  • About
  • The Global ETD Search service is a free service for researchers to find electronic theses and dissertations. This service is provided by the Networked Digital Library of Theses and Dissertations.
    Our metadata is collected from universities around the world. If you manage a university/consortium/country archive and want to be added, details can be found on the NDLTD website.
1

Expectations and Preferences of Parents and Adolescents Regarding Feedback of Individual Genetic Findings in an HIV-TB Genomic Research Project in Botswana

Ralefala, Dimpho 18 April 2023 (has links) (PDF)
Background: There has been tremendous progress in the use of genomics1 in biomedical research and medical care since the launch of the Human Genome Project in 1990. However, it has also introduced new ethical challenges regarding the feedback of findings generated in genomic sequencing. While some would argue in support of the return of individual findings generated from genomics research, participants' preferences regarding which findings should be fed back differs. Most literature discusses feedback of findings in high income countries and very few address this issue in lower and middle-income countries (LMICs). As a result, it remains unclear whether and how individual findings from genomic studies in Africa should be fed back, who should provide these results and when. Methods: In order to contribute to addressing this gap, an empirical study was conducted to explore expectations and preferences for feedback of individual genetic findings in an HIV-TB genomics research project in Botswana. A qualitative study methodology involving deliberative focus group discussions (dFGDs) and in-depth interviews (IDIs) was used. Participants for this study were adolescents involved in an HIV-TB genomics study being conducted at the Botswana-Baylor Children's Clinical Centre of Excellence (BBCCCE). Parents and caregivers of children enrolled in that same genomic study were also enrolled in this study. A total of 93 participants (44 adolescents and 49 parents and caregivers) were enrolled in 12 dFGDs (6 groups of adolescents and 6 groups of parents and caregivers). Each group of participants met twice within a week, resulting in a total of 24 dFGD meetings. Participants of the dFGDs and in-depth interviews were selected purposively. Additionally, indepth interviews were conducted with 12 dFGD participants (6 adolescents and 6 parents or caregivers). The dFGDs and IDIs were conducted in Setswana, audio-recorded, transcribed and translated into English. Data were imported into NVivo 12 and analysed using the framework approach for qualitative data analysis. Results: The study findings revealed that participants' desire to receive individual genetic results is underpinned by their cultural values, mainly solidarity and reciprocity. Participants viewed research participation as a mutual relationship and considered the return of research results to be one way of reciprocating their efforts. This seems to be underpinned by the principle of Ubuntu which advocates for solidarity and reciprocity within communities. Participants noted that when reciprocity obligations are respected, participants feel valued and expressed that not respecting reciprocity expectations could undermine participants' trust and participation in future studies. Almost all participants wanted to receive individual genetic results. While parents and caregivers wanted to receive individual genetic results regardless of their severity, preventability or actionability, adolescents were reluctant to receive results for genetic conditions that are severe and non-preventable, especially if they are also unactionable. Participants advanced different reasons for feedback of results including for awareness, improving lifestyle, accepting one's' situation, and preparing for the future. The findings also reveal the importance of taking into account participants' context, relations and empowerment when making decisions about whether and which results ought to be fed back. When asked about practical considerations for feedback of results, both adolescents and parents expressed that they would prefer to receive individual genetic results in person, with adolescents preferring researchers to provide feedback, while parents preferred feedback from doctors associated with the study. Adolescents and parents both expressed that feedback should be supported by counselling, but they differed on the timing of feedback. Most participants shared that they would like to be informed about the possibility of discovering individual genetic results during the consent process and that consent be obtained for feedback during the enrolment process. They further expressed that in cases where prior consent to feedback was not obtained, then participants should be re-contacted where lifesaving genetic information is discovered. Participants emphasized the need for researchers to ensure that participants' decisions regarding feedback of results are well-informed. Autonomy, transparency, and communication were identified as key values to uphold during the consent process. Conclusion: In conclusion, expectations of solidarity and reciprocity could translate into an obligation to feedback selected individual genetic results in African genomics research. Decisions on practicalities for feedback of results should take into account participants' context and considerations of participants' preferences. For example, in settings like BBCCCE it might be feasible for the study team to relay participants' results to treating doctors in the same centre, while also organising counselling services if necessary. However, in cases where a study is done in a public facility with limited resources, that could be difficult to implement. Consequently, researchers may have to take up the responsibility of feeding back individual results as well as providing genetic counselling in such settings. To make these decisions, researchers should engage with relevant stakeholders including policymakers and local Institutional Review Boards (IRBs) so as to make informed decisions regarding the feasibility and acceptability of their approach to feedback of results. Obtaining participants' consent for feedback of results is important to ensure that their rights and wellbeing are protected in research. This is critical in building trust relationships between participants and researchers. Lastly, although this study is focused in Botswana, these findings could also be generalised to similar contexts in Africa and provide an authoritative voice to H3Africa to be able to mandate projects with potential to generate individual genetic results to make provisions to feedback these results to study participants.
2

Performance evaluation of RC flexural elements strengthened by advanced composites

Andreou, Eftychia January 2002 (has links)
The flexural performance of composite systems made of reinforced concrete, Fibre Reinforced Polymers (FRPs) and adhesives was studied during the current research. The experimental investigation was principally concentrated on the potential use of Kevlar® 49 (aramid fibre) for RC beam strengthening. The main aims of research have been; (a) to investigate the relative merits of using Aramids in comparison to other FRPs, (b) strength optimisation of systems to prevent excessive losses of ductility, (c) to examine the failure mode and crack patterns, together with salient strength factors at ultimate limit state and (d) to carry out analytical modelling using a commercial FE package. The experimental investigation comprised of testing 55 simply supported RC beams of either 1.5m or 2.6m length. In addition to the parametric studies included in points (a)-(d) above (to assess the section characteristics), further experimentation was conducted to investigate the beam performance by varying the factors of; (e) beam shear span, (f) FRP anchorage length, (g) concrete surface preparation, (h) FRP end-anchoring, (i) beam precracking, (j) introduction of air-voids within the bond line of FRP/concrete, (k) influence of cyclic loading and, (1) exposure to aggressive environment. The results from current tests confirm elements of reports from other researchers (by thorough review of literature) that all FRPs have great potential for flexural strengthening of RC members. This is valid even in cases where additional environmental degradation and/or cracking (due to serviceability loads), had taken place. Aramid fibres were found to result in favourable outcomes concerning both strength and ductility enhancements. It was determined, both from experiments and non-linear modelling, that the amount of FRP fibre content is an important factor in every strengthening application. Experimentation showed that depending on the existing condition of the structure (concrete strength, internal reinforcement ratio, section dimensions, degradation level and load configuration), there seems to be a unique level of optimum fibre content. The FRP levels in excess of the optimum were seen to lead to premature brittle tearing-off failure modes. It was also found that to prevent premature beam failure (due to incompatibility of stress at concrete and FRP interface), a maximum possible anchorage length should be considered in order to deliver an optimum section performance. The results from the analytical modelling indicated a most satisfactory agreement with the experimental data after the initial mechanical properties were calibrated. It was found that actual representation of material properties (e.g. steel constitutive law) are of great significance, for an accurate modelling of RC element loaded behaviour. The bond developed between the FRP and concrete is one of the key parameters for achieving good performance of the systems. It was determined that concrete surface preparation and priming is beneficial, while the introduction of air-voids due to poor workmanship can reduce the section load bearing capabilities. Cyclic loading on FRP strengthened sections was found to curtail the full rotational capacity utilisation of the beam. However, even the above mentioned curtailed behaviour was more advantageous than cyclically loaded beam performance without FRP strengthening.

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