Assessment of the knowledge, attitude and practices of the informed consent process in oral healthcare among dental students in Makerere University Dental Hospital, Uganda.

INTRODUCTION: Informed consent is an ethical and legal component of healthcare. It ensures patient autonomy and allows patients to make decisions regarding their treatment. In dental care, informed consent is particularly important because most dental procedures are invasive. Since dental students are future dentists, they need to learn about their ethical obligations and accountability through the informed consent process as this is critical to patients' well-being. This study aimed to determine dental students' knowledge, attitudes, and practices of the informed consent process for oral health care in Makerere University Dental Hospital, Uganda. STUDY METHODOLOGY: This was a descriptive cross-sectional study using quantitative methods. It was carried out at Makerere University Dental Hospital and third, fourth, and fifth-year students (n = 102) pursuing a Bachelor of Dental Surgery program took part in the survey. A self-administered structured questionnaire was used to assess their knowledge, attitudes, and practices of informed consent for oral health care. Collected data were entered into Epi-data version 3.1, where it was cleaned, coded, and imported to STATA version 14 software for statistical analysis. RESULTS: About two-thirds 67 (65.7%) of the participants were males. The mean age was 25 (SD = 3.21) years. The majority (90%) of the students had a high level of knowledge of the informed consent process. About (80%) had a positive attitude towards informed consent and (85%) most often practiced the informed consent process. Based on bi-variate analysis, training on informed consent, year of study, age, and sex were significantly associated with the informed consent process. However, there was no significant risk factor associated with informed consent in multiple logistic regression analysis. CONCLUSION: The study findings highlighted high levels of knowledge, positive attitude, and practice of the informed consent process among the clinical dental students. Continuous training is necessary to remind dental students about the importance of informed consent in healthcare, not only for complex procedures.

Benefit sharing in genomic and biobanking research in Uganda: Perceptions of researchers and research ethics committee members.

Background: Genomic and biobanking research has increased in Africa over the past few years. This has raised pertinent ethical, legal, and societal concerns for stakeholders such as sample or data ownership, commercialization, and benefit sharing. There is limited awareness of the concept of benefit sharing by stakeholders in sub-Saharan Africa. Objective: This study aimed to explore the perceptions of researchers and research ethics committee members on benefit sharing in international collaborative genomic and biobanking research. Methods: Qualitative in-depth interviews were conducted with 15 researchers and 19 research ethics committee members. A thematic approach was used to interpret the results. Results: Six themes emerged from the data and these included perceptions on the benefits of genomic and biobanking research; discussion of benefit sharing with participants during the informed consent process; legal implications of benefit sharing and the role of material transfer agreements; equity and fairness in sharing the benefits of genomic research; perceived barriers to fair benefit sharing; and recommendations for fostering fair and equitable benefit sharing in genomic and biobanking research. Most respondents clearly understood the various forms of benefits of genomic and biobanking research and opined that such benefits should be fairly and equitably shared with low and middle-income country researchers and their institutions, and research communities. The perceived barriers to the fair benefit sharing unfavorable include power disparities, weak research regulatory frameworks, and lack of scientific integrity. Conclusion: Overall, respondents believed that the distribution of the advantages of genomic and biobanking research in North-South collaborative research was not equitable nor fair, and that the playing field was not leveled. Therefore, we advocate the following for fair and equitable benefit sharing: Building the capacities and empowering research scientists in developing nations; strengthening regulatory frameworks and extending the purview of the research ethics committee in the development and implementation of material transfer agreements; and meaningfully involving local research communities in benefit sharing negotiations.

Researchers' perspectives on return of individual genetics results to research participants: a qualitative study.

Genetic results are usually not returned to research participants in Uganda despite their increased demand. We report on researchers' perceptions and experiences of return of individual genetic research results. The study involved 15 in-depth interviews of investigators involved in genetics and/or genomic research. A thematic approach was used to interpret the results. The four themes that emerged from the data were the need for return of individual results including incidental findings, community engagement and the consenting process, implications and challenges to return of individual results. While researchers are willing to return clinically significant genetic results to research participants, they remain unsure of how this should be implemented. Suggestions to aid implementation of return of results included reconsenting of participants before receiving individual genetic results and increasing access to genetic counseling services. Community engagement to determine community perceptions and individual preferences for the return of results, and also prepare participants to safely receive results emerged as another way to support return of results. Researchers have a positive attitude toward the return of clinically significant genetic results to research participants. There is need to develop national guidance on genetic research and also build capacity for clinical genetics and genetic counseling.