Challenges That Face Behavioral Genetic Studies: Researchers Perspective from the MENA Region

Background: Behavioral genetic studies are important for the understanding of the contribution of genetic variations to human behavior. However, such studies might be associated with some ethical concerns. Methods: In the current study, ethical challenges related to studies of genetic variations contributing to human behavior were examined among researchers. To achieve the study purpose, the Middle East and North Africa (MENA) region researchers were taken as an example, where the aftermentioned ethical challenges were discussed among a group of researchers, who were the participants of an online forum. Discussions and responses of the participants were monitored and were later qualitatively analyzed. Results: Discussions revealed that several ethical challenges, including subjects’ recruitment, the difficulty of obtaining informed consents, and issues of privacy and confidentiality of obtained data as information leakage, in this case, will lead to social stigma and isolation of the participants and their immediate family members. Jordanian social and cultural norms, faith, and the tribal nature of the population were raised as a major challenge that might face conducting behavioral genetic studies in the Arab populations of the MENA. The lack of regulation related to the conduction of genetic studies, misunderstanding, and misuse of genetic information are other challenges. A full explanation of genetic research and the current and future possible benefits/risks of such research could be potential solutions. Conclusion: In conclusion, the MENA populations are tackled with major challenges in relation to conducting research studies in genetics/antisocial behavior field/s. Establishment of guidelines related to genetic studies, capacity building, increasing public awareness about the importance of genetic testing, and enhancing responsible conduct of research will facilitate the conduct of such sensitive studies in the future in the region.

Mongolian Neuroscience Society (MNS) - The 8th Annual Meeting of the Mongolian Neuroscience Society and IBRO-APRC Ulaanbaatar Associate School on Fundamental Techniques in Neuroscience 2021

In 2021, the Mongolian Neuroscience Society (MNS), together with the International Brain Research Organization (IBRO) and the Mongolian National University of Medical Sciences (MNUMS), organized two events: The 8th Annual Meeting of the Mongolian Neuroscience Society themed as "Multidisciplinary Brain Science 2021" and the IBRO-APRC Ulaanbaatar Associate School on Fundamental Techniques in Neuroscience. Multidisciplinary Brain Science 2021 aimed to bring together scientists with brain science-related backgrounds under an umbrella meeting consisting of educational lectures and academic connections. It was held with 14 invited lecturers and 20 speakers for two days virtually from August 13 to 14, 2021. The meeting was streamed live on social media, which brought together 2.6K online viewers. The goal of the IBRO-APRC Associate School on Fundamental Techniques in Neuroscience was to enable students to understand the theoretical and practical fundamentals of neuroscience. This virtual school was formed by 20 students and 16 faculty members from 5 countries. The students participated in lectures, technical talks, interactive discussions, and hands-on sessions on responsible conduct of research in neuroscience with a high neuroethical standard during the 6-day program. The events were a great success, offering a unique opportunity for the participants to get updated with current advances in brain science by global and regional experts in neuroscience and facilitate academic collaborations.

Ethical considerations for HIV remission clinical research involving participants diagnosed during acute HIV infection

HIV remission clinical researchers are increasingly seeking study participants who are diagnosed and treated during acute HIV infection—the brief period between infection and the point when the body creates detectable HIV antibodies. This earliest stage of infection is often marked by flu-like illness and may be an especially tumultuous period of confusion, guilt, anger, and uncertainty. Such experiences may present added ethical challenges for HIV research recruitment, participation, and retention. The purpose of this paper is to identify potential ethical challenges associated with involving acutely diagnosed people living with HIV in remission research and considerations for how to mitigate them. We identify three domains of potential ethical concern for clinicians, researchers, and ethics committee members to consider: 1) Recruitment and informed consent; (2) Transmission risks and partner protection; and (3) Ancillary and continuing care. We discuss each of these domains with the aim of inspiring further work to advance the ethical conduct of HIV remission research. For example, experiences of confusion and uncertainty regarding illness and diagnosis during acute HIV infection may complicate informed consent procedures in studies that seek to recruit directly after diagnosis. To address this, it may be appropriate to use staged re-consent procedures or comprehension assessment. Responsible conduct of research requires a broad understanding of acute HIV infection that encompasses its biomedical, psychological, social, and behavioral dimensions. We argue that the lived experience of acute HIV infection may introduce ethical concerns that researchers and reviewers should address during study design and ethical approval.

EnTIRE: Mapping Normative Frameworks for EThics and Integrity of REsearch

Background: The areas of Research Ethics and Research Integrity (RE+RI) are rapidly evolving. In the EU and internationally, new legislation, codes of conduct and good practices are constantly being developed. New technologies (e.g. gene editing), complex statistical methods (e.g. biostatistics), pressure to publish and obtain grants, and growing emphasis on stakeholder driven science (e.g. public-private partnerships) increase the complexity of conducting science. In this complex and dynamic environment, researchers cannot easily identify the correct rules and best tools for responsible conduct of research. This also increasingly constitutes a challenge for RE+RI experts. Aim: Our aim is to create a platform that makes the normative framework governing RE+RI easily accessible, supports application in research and evaluation, and involves all stakeholders in a participatory way, thus achieving sustainability. The platform will foster uptake of ethical standards and responsible conduct of research, and ultimately support research excellence and strengthen society’s confidence in research and its findings. Vision: Our vision is that in order to make the normative framework governing RE+RI accessible, a dynamic online Wiki-platform, owned by the community of RE+RI stakeholders, is needed. The value of this platform will lie in the availability of practical information on how to comply with EU, national and discipline-specific RE+RI standards and legislation, including information on rules and procedures, educational materials, and illustrative cases and scenarios. Adopting open science (open source and open data) approaches, the platform will be easy to use, by applying novel techniques for data collection and comparison, enabling users to navigate quickly and intuitively to appropriate content. In order to keep the platform up-to-date and sustainable, it will be based upon active involvement of the RE+RI community, and will contribute to further development of this community by providing a podium for reflection and dialogue on RE+RI norms and practices. Objectives: EnTIRE’s work packages (WP) will: undertake an in-depth stakeholder consultation across EU countries exploring RE+RI experiences and practices in order to define the boundaries of data to be collected, and developing a mapping structure adapted to user needs (WP 2); assemble the relevant normative elements, including RE+RI rules and procedures, educational materials, and illustrative casuistry, and identify relevant institutions across EU countries (WP 3-5); develop a user-friendly Wiki-platform and online resources to foster and facilitate responsible research practices and to promote compliance amongst European researchers with RE+RI standards and pertinent legislation and regulations (WP 6); and foster further development of the RE+RI community, that will support the platform and be supported by it, will keep the information up-to-date, disseminate the project’s findings and develop innovative strategies for maintaining the platform and building relationships to relevant organisations for further dissemination, including sustainable funding (WP 7). Relevance to the work programme: The proposed project responds directly to the core requirement of call SwafS-16-2016 to ‘provide a dynamic mapping of the RE+RI normative framework which applies to scientific research conducted in the EU and beyond’. Our proposal does this by using a participatory approach, stimulating knowledge transfer regarding codes and regulations, resources and institutions, and cases, by applying innovative ICT solutions and open science approaches, and by further developing a community of active users, to enable sustainability after the end of the project.

Educating for Responsible Research Practice in Biomedical Sciences

New developments in the field of biomedicine can have extensive implications for society. To steer research efforts in a responsible direction, biomedical scientists should contribute to a forward-looking ethical, and societal evaluation of new developments. However, the question remains how to equip students sufficiently with the skills they need to contribute to this evaluation. In this paper, we examine how the four dimensions of Responsible Research and Innovation (anticipation, reflexivity, inclusivity, and responsiveness) inform the identification of learning goals and teaching approaches that contribute to developing these skills in biomedical scientists. We suggest that these educational approaches focus on the skills to anticipate intended and unintended outcomes, reflect on the epistemological and moral aspects of research practice, and be inclusive of the variety of voices in society. We argue that if these dimensions are properly integrated into biomedical curricula, they will help students develop the attitudinal aspects necessary for becoming responsive, and prepare them for implementing the dimensions of responsible research into their daily practice. This paper focuses specifically on skills biomedical scientists need for the responsible conduct of research. Therefore, our analysis results, at least in part, in domain-specific recommendations. We invite educators from other disciplines to do the same exercise, as we believe this could lead to tailored educational approaches by which students from various disciplinary backgrounds learn how they each have a role in contributing to socially robust and morally responsible research practice.

A Course for Teaching and Learning About the Responsible Conduct of Research

Over the past 30 years, the scientific community has been increasingly challenged to provide the next generation of researchers with training in responsible conduct of research (RCR). Although RCR courses, workshops, and seminars are now routinely taught internationally, there is little uniformity in goals, content, pedagogy, duration, class size, or methods of assessment. The result is a mixed picture of effectiveness. In this manuscript, we describe goals, rationales, and features for a course tested and revised through well over 100 iterations. Based on our experience and that of others with whom we have shared this model, we propose this course as one that RCR instructors might readily and successfully adopt or adapt.

COVID-19 as an Opportunity to Expand the Instructional Portfolio of STEM Librarians

The pivot to online teaching caused by the COVID-19 pandemic enabled science and engineering librarians at Vanderbilt University to expand their teaching roles within graduate-level courses in biomedical engineering, chemistry, and physics. In addition to addressing traditional information literacy skills related to information retrieval and resource evaluation, these new lessons addressed important science process skills such as academic reading, responsible conduct of research, and research data management. A facility with cloud-based teaching tools such as Zoom breakout rooms and Excel for Microsoft 365 allowed for engaging instructional experiences, even within synchronous online instructional environments. By integrating these topics into the graduate curricula, these guest lectures supported the professional development of early career graduate students and deepened relationships with the course instructors of record.

Philosophy of Scientific Malpractice

This paper presents current work in philosophy of science in practice that focusses on practices that are detrimental to the production of scientific knowledge. The paper argues that philosophy of scientific malpractice both provides an epistemological complement to research ethics in understanding scientific misconduct and questionable research practices, and provides a new approach to how training in responsible conduct of research can be implemented.