Research Ethics Training Research Articles

Tackling challenges in rare diseases: The ISGACA approach on non-pancreatic cancers in the periampullary region

ObjectiveRare but aggressive cancer types like non-pancreatic periampullary cancers pose unique challenges for cancer research due to their low incidence rates and lack of consensus on optimal treatment strategies, therefore necessitating a collaborative approach. The International Study Group on non-pancreatic peri-Ampullary CAncer (ISGACA) aimed to build a collaborative initiative to pool expertise, funding opportunities, and data from over 60 medical centers, in order to improve outcomes for underrepresented patients with rare cancers. MethodsThe ISGACA approach predefined a stepwise approach including a research scope, establishing a dedicated steering committee, creating a recognizable brand, identifying research gaps, following a well-defined timeline, ensuring robust data collection, addressing legal and ethical considerations, securing financial resources, investing in research ethics training and statistical expertise, raising awareness, creating uniformity, and initiating prospective studies. ResultsOverall, 60 medical centers joined the ISGACA consortium (41 in Europe, 15 in North-America, three in Asia, one in Australia). The database includes 4309 patients. Nine publications and several ongoing studies which in turn allowed for a successful application of research grants. Subsequently, an international consensus meeting established uniform definitions and classifications, and one prospective multicenter international clinical trial has been initiated. ConclusionBy sharing knowledge, expertise, and clinical data, the ISGACA approach has not only gathered sufficient evidence to secure grants and ethical approvals for prospective studies, but also demonstrates options for standardizing patient care and improving outcomes for patients with rare cancers. The ISGACA approach offers a detailed methodology for initiating research on rare cancers and could serve as a replicable model for future research initiatives.

Understanding QRPs and Blatant Misconduct in Applied Linguistics Research: A Book Review of Addressing Questionable Research Practices in Applied Linguistics: A Practical Guide

his book explores the ethical gray area of Questionable Research Practices (QRPs), including its similarities and differences (Butler et al., 2017; Ravn & Sørensen, 2021). It lies between responsible research conduct and clear misconduct like falsification, fabrication, plagiarism. It helps Applied Linguistics (henceforth AL) researchers to carry out ethical research which addresses the ambiguity and debate surrounding certain practices, such as data sharing and outlier management. They are often not well covered in traditional research ethics training. There is a need for AL researcher to identify the good, the bad, and the ugly in the research practices (Banks et al., 2016). To enhance understanding and ethical decision-making, the book provides a taxonomy of 58 QRPs, lesson plans, suggested readings, and discussion scenarios for use in research methods courses and workshops.

A Model for Engaging Citizen Scientists: A Community-Partnered Research Collaboration to Address Inequities for Black Birthing People.

Co-creation of a citizen-science research initiative with a collaborative team of community members and university-based scientists to address regional disparities in maternal and fetal health outcomes for Black birthing people. Citizen scientist-led projects, where community members actively contribute to each discovery step, from setting a research agenda to collecting data and disseminating results, can extend community participatory research initiatives and help reconceptualize traditional research processes. The Pregnancy Collaborative is a citizen-science research initiative and one of nine scientific committees of The Pittsburgh Study-a longitudinal, community-partnered study designed to bring together collaborators to improve child thriving. Ten community members and five university-based scientists participated during all phases of developing a citizen-scientist collaboration over an initial two-and-a-half-year period. Phases include forming the Pregnancy Collaborative and group research ethics training; co-creating a research agenda grounded in shared principles; and community-partnered data collection, analysis, and dissemination. These phases produced three key co-designed products: (1) a mission and vision statement of the Pregnancy Collaborative, (2) a Collaborative-endorsed research agenda, and (3) a citizen-scientist-executed research survey. Lessons learned from the formation of the Pregnancy Collaborative highlight the importance of equitable power distribution through bidirectional knowledge sharing and by centering intellectual effort, lived experience, and tools and resources of those affected by health inequities. Using a citizen science approach to co-designing and executing research helps us move maternal health inequity work from "research on" to "research with."

Research ethics for all: Development of a social-behavioral research ethics education program for community research partners with developmental disabilities

BackgroundPeople with developmental disabilities make important contributions to research. However, inaccessible research ethics trainings present a barrier to them taking on some research roles. ObjectivesWe developed a social-behavioral research ethics training that leads to certification tailored to the accessibility needs and roles of community research partners with developmental disabilities. MethodsWe collaborated with diverse partners (people with developmental disabilities, a disability service provider, health researchers, human research participant protections experts) to develop the research ethics training. To identify potential training content, we conducted a rapid scoping review of ethical, legal, and social issues in social-behavioral research with adults with developmental disabilities and reviewed national research ethics curricula. Through discussions and a modified Delphi process, we worked with partners to identify content to teach; partners also provided guidance on accessibility. ResultsThe training and rapid scoping reviews and input from partners resulted in 93 potential educational content elements to include. After completing the modified Delphi process, partners recommended inclusion of 83 of these content elements in the educational training and provided input on depth and approach to teaching this content. Research Ethics for All is a freely available training that includes 5 units, delivered via didactic and active learning, and assessment activities to verify understanding. Research Ethics for All should be facilitated by an experienced researcher. ConclusionsResearch Ethics for All includes foundational social-behavioral research ethics content designed to support community research partners with developmental disabilities to take on new research responsibilities.

Exploring the landscape of academic retractions in medicine: a comprehensive umbrella review.

The escalating trend of academic article retractions over the last decades raises concerns about scientific integrity, but heterogeneity in retractions and reasons for them pose a major challenge. We aimed to comprehensively overview systematic reviews focusing on retractions in the biomedical literature. We abstracted salient features and bibliometric details from shortlisted articles. The Joanna Briggs Institute (JBI) Checklist for Systematic Reviews and Research Syntheses was used for validity appraisal. A total of 11 reviews were included, published between 2016 and 2023, and reporting on a total of 1851 retracted studies. Several major reasons for retractions were identified, spanning both misconduct (e.g., falsification, duplication, plagiarism) and non-misconduct issues (e.g., unreliable data, publishing problems). Correlates include author-related factors (number of authors, nationality) and journal-related factors (impact factor), with repeat offenders contributing significantly. Impacts of retractions is profound, affecting scholarly credibility, public trust, and resource utilization. In order to prevent retractions and amend their adverse effects, rigorous and transparent reporting standards, enhanced training in research ethics, strengthened peer review processes, and the establishment of collaborative and integrated research integrity offices are proposed.

Researchers Training Researchers: Ethics Training in Quantitative Applied Linguistics

AbstractThis forum piece reports on a brief survey of current quantitative research ethics training materials in Applied Linguistics (AL). This survey was conducted as a step towards an increased understanding of the ways in which we, as a field, train students and researchers to conduct quantitative research ethically. The survey was carried out in the process of creating research ethics training materials as part of a grant‐funded project related to questionable research practices (QRPs). Through manual and computer‐assisted searches in twenty‐four textbooks and twenty‐three course syllabi from the past five years, three themes emerged: (1) research ethics is most often conceptualized in terms of IRB‐related topics, (2) when ‘ethical gray‐zone’ issues are mentioned, the focus is primarily on methodological transparency, data sharing/open science, and selecting the appropriate research design and statistical tests, and (3) materials tend to address the topic of research ethics in a single section or chapter, or in a single day or week of a course. Against this background, we provide three recommendations that our field can implement to provide more robust and thorough research ethics training for students and researchers in TESOL and Applied Linguistics: (1) expand our conceptualization of research ethics to include ethical gray‐zone issues, (2) be thorough and explicit in our discussion of ethical issues related to research decisions, and (3) incorporate research ethics as a recurring theme throughout textbooks and courses.

Knowledge, attitudes, and practices of the ethics in medical research among Moroccan interns and resident physicians

BackgroundIn Morocco, medical research ethics training was integrated into the medical curriculum during the 2015 reform. In the same year, a law on medical research ethics was enacted to protect individuals participating in medical research. These improvements, whether in the reform or in the enactment of the law, could positively impact the knowledge of these researchers and, consequently, their attitudes and practices regarding medical research ethics. The main objective of this work is to assess Moroccan physicians’ knowledge, attitudes, and practices at the beginning of their careers (interns and residents) in medical research ethics.Patients and methodsThis is a multicenter cross-sectional study conducted in 2021 among Moroccan physicians. Three scores were created and validated to assess physicians’ level of knowledge, attitudes, and practices regarding research ethics. A descriptive analysis was carried out, followed by a univariate analysis and a multivariate analysis using multivariate binary logistic regression to study the factors associated with the different calculated scores.ResultsA total of 924 physicians were included in the study, with an average age of 27.8 ± 2.2 years. 40.7% had a high medical research ethics knowledge score, and 68.8% had good attitudes. These two scores were positively associated with age and were statistically higher in residents and in physicians who had received training in medical research ethics during their medical curriculum. Only 29,9% of physicians who had participated in research studies had adequate practices with medical research ethics. This score was statistically higher in residents and in physicians who had heard about research ethics.ConclusionA genuine introduction to ethics in the medical curriculum is essential to enhance researchers’ knowledge, attitudes, and practices. This, in turn, can lead to an increase in both the quantity and quality of research conducted in Morocco.

Engaging African American Faith Leaders as Partners in Ethical Research

This paper outlines an initiative to adapt the Community Partnered Research Ethics Training (CPRET) for the cultural context of the CHURCH (Congregation as Healers Uniting to Restore Community Health) project. The CHURCH project is a community-partnered participatory research project that seeks to promote the mental well-being of African American populations by developing, implementing, and evaluating a mental health training curriculum for faith leaders in Black churches. Participatory research, in which community stakeholders collaborate with researchers as equal partners to address problems impacting marginalized communities, has recently become more popular in academia. Training is necessary to equip community partners with the skills and knowledge required for full research participation. Community partners frequently encounter ethical issues in participatory research, but limited training resources are available to proactively prevent and address such issues. The CPRET was developed through a collaboration between the Clinical and Translational Science Institute and the Human Research Protection Office and Community Research Advisory Board at the University of Pittsburgh. It surveys research processes and core research ethics principles, and it stimulates discussion regarding best practices by engaging participants in scenario-based exercises in which they identify ethical and unethical research. By describing how we utilized the CPRET in the CHURCH project and presenting a summary of participant feedback, we aim to build resources for community-engaged scholars seeking to engage community members in ethical research.

Public health and research ethics education: the experience of developing a new cadre of bioethicists at a Ugandan institution

Research ethics education is critical to developing a culture of responsible conduct of research. Many countries in sub-Saharan Africa (SSA) have a high burden of infectious diseases like HIV and malaria; some, like Uganda, have recurring outbreaks. Coupled with the increase in non-communicable diseases, researchers have access to large populations to test new medications and vaccines. The need to develop multi-level capacity in research ethics in Uganda is still huge, being compounded by the high burden of disease and challenging public health issues. Only a few institutions in the SSA offer graduate training in research ethics, implying that the proposed ideal of each high-volume research ethics committee having at least one member with in-depth training in ethics is far from reality. Finding best practices for comparable situations and training requirements is challenging because there is currently no “gold standard” for teaching research ethics and little published information on curriculum and implementation strategies. The purpose of this paper is to describe a model of research ethics (RE) education as a track in an existing 2-year Master of Public Health (MPH) to provide training for developing specific applied learning skills to address contemporary and emerging needs for biomedical and public health research in a highly disease-burdened country. We describe our five-year experience in successful implementation of the MPH-RE program by the Mbarara University Research Ethics Education Program at Mbarara University of Science and Technology in southwestern Uganda. We used curriculum materials, applications to the program, post-training and external evaluations, and annual reports for this work. This model can be adapted and used elsewhere in developing countries with similar contexts. Establishing an interface between public health and research ethics requires integration of the two early in the delivery of the MPH-RE program to prevent a disconnect in knowledge between research methods provided by the MPH component of the MPH-RE program and for research in ethics that MPH-RE students are expected to perform for their dissertation. Promoting bioethics education, which is multi-disciplinary, in institutions where it is still “foreign” is challenging and necessitates supportive leadership at all institutional levels.

BEYOND LEGAL FRAMEWORKS AND SECURITY CONTROLS FOR ACCESSING CONFIDENTIAL SURVEY DATA IN THE UNITED STATES: ENGAGING DATA USERS IN DATA PROTECTION.

With growing demand for data reuse and open data within the scientific ecosystem, protecting the confidentialy of survey data and privacy of data subjects is increasingly important. Doing so requires more than legal procedures and technological controls; it requires social and behavioral intervention. In this research note, we delineate the disclosure risks of various types of survey data (e.g., longitudinal data, social network data, sensitive information, biomarkers, and geographic data), the current motivation for data reuse, and challenges to data protection. Despite rigorous efforts to protect data, there are still threats to protection of confidentiality in microdata. Unintentional data breaches, protocol violations, and data misuse are observed even in well-established restricted data access systems, indicating that the systems may all rely heavily on trust. Creating and maintaining that trust is critical to secure data access. We suggest four ways of building trust; User-Centered Design Practices; Promoting Trust for Protecting Confidential Data; General Training in Research Ethics; and Specific Training in Data Security Protocols, with an example of a new project 'Researcher Passport' by the Inter-university Consortium for Political and Social Research. Continuous user-focused improvements in restricted data access systems are necessary so that we promote a culture of trust among the research and data user community, train both in the general topic of responsible research and in the specific requirements of these systems, and offer systematic and holistic solutions.

Perceptions, Understandings, and Practices in Clinical Research Ethics among Medical Postgraduates in India: A Cross-Sectional Study

Background: Research methodology is now part of the MBBS curriculum, which is a substantial adjustment to MCI standards. Objective: To assess the student's comprehension of the subject, level of interest and how it is used in clinical studies. Methods: We created a standard set of 25 questionnaires to assess postgraduate and PhD students' attitudes, awareness, and knowledge about research ethics and committees. Statistical analysis was used to compare the mean knowledge scores of several groups (age, gender, education, past research experience, etc.). Results: Students had a good attitude and understanding of research ethics and research ethics committees. We observed that past research experience and training are critical in predicting knowledge ratings. The study findings indicated a significant difference in the mean knowledge score depending on past research experience. Similarly, we observed that prior research ethics training had a significant impact on mean scores. Conclusions: A functioning research ethics committee should be present in every hospital. Students should be informed of the role and responsibilities of the ethics committee. Students must be informed of research ethics before undertaking any human subjects research. To broaden student comprehension, the ethics committee must offer seminars, workshops, and conferences on a regular basis.

A Survey Study on Knowledge and Attitude Toward the Ethics Committee and Research Ethical Practices Among Researchers From Kuwait

The integrity of research findings and the safety of participants who voluntarily consent to participate in research studies must be assured through ethical approaches. Additionally, ethical guidelines and the ethics committee protect participants from unfair practices by the research team. Therefore, this study aims to assess the knowledge and attitudes toward the ethics committee and research ethical practices among the researchers of a diabetes institute in Kuwait. An anonymous survey was conducted through an online questionnaire using Microsoft Forms. The study had a response rate of 86%. Among the 55 participants in this study, 43 (78%) had ethics training. Researchers involved in more than four research projects were shown to have a much higher awareness of the ethics committee and its role than researchers involved in no projects. Approximately 90% of researchers had training in research ethics and were knowledgeable about informed consent forms and assent, as well as additional protections for vulnerable populations. Ninety-eight percent of respondents were of the view that an ethics committee was necessary. Our study concluded that most of the researchers at the institute were aware of the role of the ethics committee, and ethical principles. However, we recommend that continuous and customized training on research ethics should be provided.

Postmortem of Retracted Scientific Publications from Türkiye

Aim: These days the number of scientific publications is crucial in career advancements and respect in the scientific community. The researchers focus on increasing the number of publications per year, which sometimes compromises the quality of publications. This study aimed to investigate the characteristics of retracted publications with contributions from Turkish authors. Methods: PubMed, Scopus, and Web of Science databases were searched with a combination of MeSH terms and free words relevant to “retracted publication/s” and “Turkey.” The inclusion criteria were (i) retracted publication and (ii) any authors of the study having affiliation with an institution in Turkey. Bibliographic information of selected publications was extracted. Results: A total of 147 publications were retrieved from three databases. The earliest retracted article was published in 1996, followed by an increasing trend of retracted publications. The study showed 106 (72.1%) articles have full-text Access. Overall 127 scientific journals have published these articles. Scientific Reports and Aesthetic Plastic Surgery were the top journals with four retracted publications. Hacettepe University, was the lead institute, contributing seven publications. The most common reasons for retractions were duplication 50 (34%) and most retracted notices were issued by editor 63 (42.9%). The majority of publications were from Medical Science 93 (63.3% paper) and the highest number, 44 were from surgery and allied. Turkish authors had international collaborations with 20 countries. Conclusion: The number of retracted publications is not high, the trend is increasing. To overcome this, research methodology and research ethics training are crucial.

Ethical human participant research in Central Asia: a quantitative analysis of attitudes and practices among social science researchers based in the region

Central Asian researchers are underrepresented in the global research production in social sciences, resulting in a limited Central Asian perspective on many social issues. To stimulate the production of local knowledge, it is important to develop strong research cultures, including knowledge of ethical practices in research with human participants. There is currently scarce evidence about research ethics regulations used by social science researchers working in the Central Asian region. This article reports findings from an online survey conducted in Kazakhstan, Kyrgyzstan, and Uzbekistan ( n = 296) from October 2021 to January 2022. Focusing on three Central Asian countries, this article addresses the following research questions: What are the attitudes and practices of social science researchers based in Central Asia toward research ethics regulations and research ethics committees (RECs)? Is research ethics training associated with improved attitudes and practices in relation to research ethics among social scientists based in Central Asia? Is research experience associated with improved attitudes and practices in relation to research ethics among social scientists based in Central Asia? Regression analyses results demonstrate that locally based social scientists with prior research ethics training implement ethical procedures in their empirical research practice more often compared to researchers without any prior research ethics training. The preliminary findings indicate that research ethics training is positively associated with Central Asia-based social science researchers’ engagement in ethical research, thus potentially increasing the amount and quality of empirical social science research produced in the region.

Awareness and Perception About Research Ethics and Misconduct Among the Teaching Staff of Health Colleges, Jazan University, Saudi Arabia.

Despite adopting biomedical research ethics rules, regulations, and statements, unethical behavior is pervasive and frequently reported. This study assessed the perception and awareness of research Ethics and Misconduct among the Teaching Staff of Health Colleges at Jazan University, southwest Saudi Arabia. This research aimed to assess the awareness and perception of research ethics and misconduct among the teaching staff of the health colleges at Jazan University in southwest Saudi Arabia. Observational cross-sectional study targeted 424 faculty members randomly chosen from health-related colleges at Jazan University. A structured questionnaire was used to collect data using a web-based survey. The overall level of knowledge about medical ethics indicated that more than half of respondents (57.8%) had a good level of knowledge, 23.4% had a fair level of knowledge, and only 18.4% had poor knowledge. The Saudi National Committee on Bioethics was only known by 49.5% of the study participants. In addition, just 48.3% of respondents knew Saudi Arabia's national standards of ethics and principles for conducting scientific research. The knowledge of research ethics was found to be significantly (P<0.05) higher in participants with higher academic positions, such as professors, MD degree holders, and participants with more extensive work experience. About 48.2% reported that the severity of penalties for scientific misconduct would highly affect scientific integrity, and 74.3% found that their understanding of rules and procedures related to scientific misconduct has a very high effect on scientific integrity. Poor knowledge of research ethics is typically associated with an individual's academic job title, as "lecturer" showed a lower level of knowledge in comparison to other job titles. Even though about 50% of participants in the study had a good understanding of research ethics, it's crucial to ensure that all faculty members have a universal understanding. Therefore, it's essential to implement an appropriate research ethics training program.

Post Graduate Students' Experiences with Research Ethics: A South African Perspective.

The strict adherence to ethical principles (namely respect for persons, beneficence/non-maleficence and justice) when conducting research involving human participants is the bedrock of research. There has been little research on students' experiences with the research ethics process and how these students incorporate ethical standards into their research work, despite previous research looking into teaching methodologies, curricula, and the educational environment for postgraduate students. The purpose of the study was to investigate postgraduate students' experiences with research ethics during their research project. A sample of 11 participants was used. Through online interviews, this qualitative study, underpinned by the interpretivist paradigm, collected data from postgraduate students from different disciplines and universities in South Africa between June and August 2021. The findings showed different perspectives on the training received in research ethics, and on support and guidance received from supervisors, and the application of research ethics principles in their research projects. Most participants indicated gaps in the teaching and support they received and had not read their university research ethics policies. By focusing on students' experiences in a developing country and different disciplines, the study contributes to the body of knowledge on postgraduate student experiences. Furthermore, the findings suggest that there is need for more research ethics training amongst postgraduate students in South Africa.

Establishment of a collaborative research ethics training program to prepare the next generation of ethics researchers in Mali

Background: Despite an increase in health research conducted in Africa, there are still inadequate human resources with research ethics training and lack of local long-term training opportunities in research ethics. A research ethics training program named United States-Mali Research Ethics Training Program (US-Mali RETP) was established through a partnership between the George Washington University Milken Institute School of Public Health (GWSPH), USA and University of Sciences, Techniques & Technologies of Bamako (USTTB), to address the critical need for improved bioethics training, leadership, and policy in Mali. Methods: The aims of the capacity building programme are achieved by leveraging US and Africa-based expertise to strengthen research ethics education and capacity through: (1) intensive faculty development to design ethics training curricula; (2) development of a research ethics specialization within the existing Masters of Public Health program (MPH); and (3) establishing professional development courses through short-term training workshops and webinars to address research and professional needs in ethics. Results: The program will strengthen USTTB’s capacity of research ethics by training at least 15 MPH students over 5 years to prepare the next generation of ethics researchers. During the first two years of the program, a new ethics training curricula was developed, two cohorts of Master’s students were enrolled, and a series of webinars and workshops were conducted with participation of Malian and international researchers. Conclusions: US-Mali RETP will promote a sustainable bioethics enterprise at USTTB, and enable dissemination of research ethics training to increase health research capacity in Mali.

480 Integrating a Research Ethics Program within an Academic Health Science Center

OBJECTIVES/GOALS: Research ethics services are critical to the clinical, research, and educational missions of an academic health science center. Our ethics program aims to develop a culture where investigators are as intellectually engaged in ethical issues of scientific integrity as they are in study design, data collection, and implementation. METHODS/STUDY POPULATION: This descriptive analysis depicts the historical development, from 2010 to 2022, of our research ethics program as an exemplar of ethics integration into the research enterprise of an academic health science center that engages in translational research. In this culture, clinicians, translational researchers and their scientific peers, research participants, and community members become involved in ethics investigation, deliberation, and innovation. RESULTS/ANTICIPATED RESULTS: There are four pillars to our research ethics program: 1) research ethics consultation service, which fosters the development of ethical best practices and standards for the practice of translational research; 2) education, which provides customized training and educational opportunities in research ethics to diverse stakeholders; 3) leadership, through collaboration and partnerships; 4) scholarly engagement, in the pursuit of innovative ethics research and professional development. Through these initiatives we can engage a broad constituency of stakeholders, become an integral component of research oversight, engage as active participants in the research enterprise, and have a critical role in guiding institutional culture. DISCUSSION/SIGNIFICANCE: The integration of our ethics program mirrors the translational science continuum which promotes the multidirectional flow of ideas among ethics consultants, laboratory/clinical scientists, implementation researchers and the community.

163 Building a Supportive Community-Engaged Research (CEnR) Infrastructure: Assessing and Addressing the Interests and Educational Needs of Researchers and Community Partners

OBJECTIVES/GOALS: Identify ways surveys capture the needs of researchers and community partners (CPs) to build a supportive community-engaged research (CEnR) infrastructure Identify strategies to match existing CEnR researchers and CPs who are interested in future CEnR projects Address educational needs of CPs and researchers for sustainable partnerships METHODS/STUDY POPULATION: The Penn State Community Health Equity &amp; Engagement Research (CHEER) Initiative team developed and implemented surveys to capture the unique interests of Penn State researchers and community partners (CPs) in an effort to build a supportive community-engaged research (CEnR) infrastructure. CPs and researchers were identified from the Penn State Clinical and Translational Science CEnR Core, prior engagement in research studies, and through tracking systems of individuals interested in research. The researcher and CP surveys ascertained detailed information of existing CEnR projects and interests in future community-academic partnerships. These results guided six workshops including an Introduction to Community-Engaged Research, Community-Facing Grant Writing, and Research Ethics Training for CPs. RESULTS/ANTICIPATED RESULTS: A total of 99 PSU researchers and 119 community partners (CPs) throughout PA communities completed the baseline surveys. From the data collected, the CHEER Initiative cataloged over 100 CEnR projects, researcher interests, resources/support needed to jumpstart future CEnR projects, types of CPs, PA regions represented by CPs and researchers, and training resources needed to prepare CPs to engage in research efforts. Heat maps illuminating researcher/CP engagement were generated from survey results. While CEnR research projects spanned all 67 PA counties, several studies were in concentrated areas, and thus allow for opportunities to target CEnR outreach in less engaged areas. Data analysis from follow-up surveys will continue to serve as a foundation to best support existing and future CEnR projects. DISCUSSION/SIGNIFICANCE: The CHEER Initiative’s purpose is to reduce health disparities and increase wellness throughout underrepresented PA communities by promoting community-engaged research (CEnR). Surveys used to capture both CEnR interests of Penn State researchers and community partners built a successful and sustainable infrastructure for meeting this goal.

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.