Biobanks in the low- and middle-income countries of the Arab Middle East region: challenges, ethical issues, and governance arrangements-a qualitative study involving biobank managers.

BACKGROUND: Biobanks have recently been established in several low- and middle-income countries (LMICs) in the Arab region of the Middle East. We aimed to explore the views of biobank managers regarding the challenges, ethical issues, and governance arrangements of their biobanks. METHODS: In-depth semi-structured qualitative interviews were conducted with a purposive sample of eight biobank managers from Egypt (6), Jordan (1), and Sudan (1). Interviews were performed either face-to-face, by phone, or via Zoom and lasted approximately 45-75 min. After verbal consent, interviews were recorded and then transcribed. The authors performed a thematic analysis of the transcripts independently and then integrated the themes via a consensus process. RESULTS: Biobank managers discussed the main challenges in establishing their biobanks. These included the staff's lack of experience and training, limited funds, deficit awareness of biobanks, obtaining funding from different sources. Only four reported they were active in distributing biospecimens and health data to researchers. Six biobanks used a broad consent model, one used tiered consent, and another allowed participants to opt-out of being recontacted. Five managers avoided partnerships with pharmaceutical companies due to concerns with unfavorable reactions from the community. Five managers did not have clear policies for returning research results to the donors. Five expressed challenges with sample and data sharing with international collaborators; all five used material transfer agreements. The biobank managers revealed variable governance arrangements and activities with community involving awareness and educational efforts rather than active engagement. Several expressed the importance of transparency with the operations of their biobanks and gaining the trust of their stakeholders. CONCLUSION: Managers of biobanks in LMICs in the Arab Middle East encounter financial, operational, and social challenges toward their sustainability efforts. Discussions with key stakeholders are warranted to manage ethical issues involving informed consent, privacy, data sharing, and the return of results. We recommend that biobank managers in the Arab Middle East form collaborative networks within the region and internationally, develop trusting governance relationships with their stakeholders, and pursue engagement activities with their communities to enhance trust.

Perceptions, attitudes, and willingness of the public in low- and middle-income countries of the Arab region to participate in biobank research.

Population-based genomics studies have proven successful in identifying genetic variants associated with diseases. High-quality biospecimens linked with informative health data from diverse segments of the population have made such research possible. However, the success of biobank research depends on the willingness of the public to participate in this type of research. We aimed to explore the factors associated with the willingness of the public to participate in biobank research from four low- and middle-income countries in the Arab region (Egypt, Jordan, Morocco, and Sudan). We used a previously validated questionnaire to assess several constructs that included the public's perceptions, attitudes, and willingness to participate in biobank research. We recruited 967 participants. More than half did not have prior awareness of biobanks. Participants' willingness to donate biospecimens and health data was less than 10%. Our results also showed that participants harbored concerns with trust, privacy, and with data-sharing involving international researchers. Predictors of willingness to participate in biobank research included no previous involvement in research and positive attitudes toward biobanks. Finally, our study showed several differences between the four countries regarding several of the investigated constructs. We conclude there should be additional efforts to raise public awareness and enhance perceptions of the public in biobanking research to enhance trust. We further recommend qualitative research to explore the underlying factors that contribute to the public's concerns with international data sharing that would enhance global health.

Nurse Who Had MERS-CoV Complications with A Near-Death Experience during Pregnancy: A Narrative Analysis.

BACKGROUND: According to prevailing views in neuroscience, near-death experiences (NDE) occurring after severe head trauma, critical illness, or coma are often life-transforming experiences in which no awareness or sensory experience of any kind is possible. Although there are general patterns, each case is quite different from the other and requires accurate recording and reporting to potentially explain the phenomenon. AIM: This narrative study aimed to explore a pregnant woman's NDE due to complications from MERS-CoV. METHODS: This was a qualitative narrative study with the administration of two unstructured interviews. After the second interview, the participant completed the Greyson NDE scale, presented through descriptive statistics. Qualitative data were analyzed using Labov's model of narrative analysis through abstract, orientation, complicating action, evaluation, resolution, and coda. RESULTS: The Greyson scale resulted in a total score of 12, confirming that the patient had experienced an NDE. Labov's model of narrative analysis revealed that the patient's experience was not limited to the NDE but had implications for her recovery and life. The patient experienced all three types of NDEs: out-of-body, transcendental, including the transition of consciousness to another dimension, and a combined experience. She also suffered from prolonged hallucinations, neuropathy, and post-intensive care syndrome (PICS). At the same time, the patient experienced what is known as NDE aftereffects, which are caused by a change in beliefs and values; she began to lead a more altruistic life and became interested in the meaning of life. CONCLUSIONS: NDE survivors should be encouraged to talk more and share their stories with others if they wish. This study not only investigates the NDE but also considerably adds to the existing literature by integrating a unique cultural view from a country outside of the US and other Western nations, and it highlights the significant role of healthcare providers in NDEs and the importance of communication with comatose patients. It underscores the need for compassion when dealing with patients with NDEs.

Researchers' Perspectives Regarding Ethical Issues of Biobank Research in the Arab Region.

Background: The recent expansion of genomic biobank research in the Arab region in the Middle East North Africa has raised complex ethical and regulatory issues. However, there is a lack of studies regarding the views of Arab researchers involved in such research. We aimed to assess the perceptions and attitudes of Arab researchers regarding these issues in biobank research. Methods: We developed a questionnaire to assess the perceptions and attitudes regarding genetic research of researchers from Egypt, Sudan, Morocco, and Jordan. The questionnaire requested demographic data, perceptions, and attitudes regarding the collection, storage, and use of biospecimens and data, the use of broad consent, data security, data sharing, and community engagement. We used multiple linear regressions to identify predictors of perceptions and attitudes. Results: We recruited 383 researchers. Researchers favored equally the use of broad and tiered consent (44.1% and 39.1%, respectively). Most respondents agreed with the importance of confidentiality protections to ensure data security (91.8%). However, lower percentages were seen regarding the importance of community engagement (64.5%), data sharing with national colleagues and international partners (60.9% and 41.1%, respectively), and biospecimen sharing with national colleagues and international partners (59.9% and 36.2%, respectively). Investigators were evenly split on whether the return of individual research results should depend on the availability or not of a medical intervention that can be offered to address the genetic anomaly (47.5% and 46.4%, respectively). Predictors of attitudes toward biospecimen research included serving on Research Ethics Committees, prior research ethics training, and affiliation with nonacademic institutions. Conclusions: We recommend further exploratory research with researchers regarding the importance of community engagement and to address their concerns about data sharing, with researchers within and outside their countries.

Supernumerary intranasal tooth: case report and review of the literature.

The supernumerary intranasal teeth are unusual phenomena. They may be asymptomatic or present with different signs and symptoms such as epistaxis, infection, and nasal obstruction. We report a case of a supernumerary intranasal tooth that erupted more than 2 years ago and was treated with surgical removal under local analgesia.

Saudi women's leadership experiences in the healthcare sector: A qualitative study.

BACKGROUND: Gender equality in the workforce and the promotion of woman leadership is critical to economic growth and the sustainable development of society and the global community. However, gender diversity in leadership positions is a concern as women continue to be underrepresented. Ensuring equal opportunities in leadership positions in the health sector can help advance the achievement of the sustainable development goals (SDGs). PURPOSE: The aim of this study was to explore Saudi women's perspectives and leadership experiences at senior-level positions in the healthcare sector. METHODS: A descriptive qualitative approach was adopted to address the study aim. This included nine semi-structured interviews with Saudi women who have held leadership positions in the health sector over the past ten years. Reflexive thematic analysis was conducted by adopting the six phases. RESULTS: The results showed that internal factors, such as qualifications, experience, and the innate qualities of a winner, are the most important factors that contribute to women's leadership. Women's role expectations, gender norms, and the patriarchal nature of the community have a negative impact on women's leadership. One of the new findings of this study was negative attitudes and lack of support from female colleagues. CONCLUSION: Women leaders in health care in Saudi Arabia share similarities and differences with women leaders around the world. However, the Saudi community has its own social norms and gender roles that cannot be denied. While Vision 2030 brought a number of positive changes in women's empowerment that participants spoke of, more research is needed to explore men's perceptions, which can complete the picture and lead to organizational improvement and changes.

Challenges Facing Arab Researchers in Publishing Scientific Research: A Qualitative Interview Study.

Background: Studies have shown an underrepresentation of researchers from lower- and middle-income countries (LMICs) in the research literature compared with their counterparts in high-income countries. We aimed to explore Arab researchers' challenges regarding conducting and publishing research in peer-reviewed journals. Methods: We used a descriptive qualitative study design of semi-structured in-depth interviews. Using purposive sampling, we recruited participants from four Arab countries in the Middle East and North Africa. All interviews were recorded, transcribed, and translated to English if the original language was Arabic or French. We analyzed the transcripts using reflexive thematic analysis. Several authors independently coded the transcripts and agreed on the identified codes, themes, and subthemes. Results: We performed 17 interviews: three from Egypt, six from Jordan, four from Morocco, and four from Sudan. Our participants' comments were divided into three broad categories with associated themes and subthemes. The first regards the conduct of research (themes of inadequate quality of research, insufficient research resources, and nonsuppurative research environment). The second category involves the publishing process (themes of poor scientific writing skills and difficulties navigating the publishing and peer-reviewed system). The third regards international collaborations and the final category recommends methods to address the challenges. Our recommendations include: enhancing the institutional research culture, increasing funding mechanisms, establishing mentoring programs and workshops on research methodology and scientific writing, and increasing the representation of LMICs on the editorial staff. Conclusions: Identifying the challenges of Arab researchers in publishing original and quality research would guide programs tailored and targeted toward Arab scholars' needs.

Development and Validation of a Biobank Questionnaire Intended for the Public in the Arab Region.

Background: Assessing the public perspectives regarding donation of biospecimens to biobanks would be helpful with the establishment of biobanks in the Arab region. Objective: To develop a biobanking questionnaire in Arabic and assess its psychometric properties. Design: Multicenter cross-sectional study. Methods: We used a two-step process for questionnaire development. First, we decided on the important constructs for a questionnaire followed by development of an item pool through review of the scientific literature and published questionnaires. The questionnaire was refined through cognitive interviews and translation. An expert panel assessed content validity. The final questionnaire included five domains: perceptions; aspects important to participation in biobank research; preferences for type of biobank; attitudes toward biobanking; and willingness to participate in biobank research. Second, we distributed the questionnaire to 250 members of the public from Egypt, Jordan, Sudan, and Morocco to assess the questionnaire's psychometric properties, including reliability (internal consistency and Cronbach's alpha) and construct validity (convergent and divergent validity and exploratory factor analysis [EFA]). Results: Internal consistency yielded a range of Cronbach's alpha for the five domains from 0.62 to 0.80. EFA showed a 12-factorial solution. Kaiser-Meyer-Olkin measure of sampling adequacy was 0.907 and Bartlett's test of sphericity was significant (p < 0.005). Attitudes were positively correlated with willingness to donate (r = 0.30; p < 0.001). Conclusions: The final biobank Arabic language questionnaire showed excellent reliability and acceptable validity parameters. The newly developed Arabic questionnaire is the first psychometrically tested tool that can be used in the Arab region to assess the public perspectives on participation in biobanking research.

Infant oral mutilation (IOM) related to traditional practices among inner city pre-school children in Sudan.

BACKGROUND: The term Infant Oral Mutilation (IOM) refers to the aggressive cultural rituals where primary canine tooth germs of infants are enucleated for therapeutic reasons. OBJECTIVES: To determine the prevalence and risk factors for IOM among inner city pre-school children in Khartoum. METHODS: In this cross-sectional study, 212 randomly selected children from twelve government pre-schools in Khartoum were examined for the presence of IOM. Socio-demographic, feeding and teething-related data were collected by self-administered questionnaires. RESULTS: The mean age of the sample was 4.7 years. The prevalence of clinical IOM was 10.8%. Multivariable regression analysis revealed that children who suffered from diarrhea during teething were 7.15 times more likely to have clinical IOM over their counterparts (p<0.0001). Mothers who were educated below elementary school level were 2.69 times more likely to have children showing clinical IOM (p= 0.0369). CONCLUSION: The present study showed that the practice of IOM is common among inner city children. Certain teething-related symptoms especially diarrhea and maternal education could be strong determinants of the malpractice of IOM.