BackgroundThe clinical introduction of non-invasive prenatal testing for fetal aneuploidies is currently transforming the landscape of prenatal screening in many countries. Since it is noninvasive, safe and allows the early detection of abnormalities, NIPT expanded rapidly and the test is currently commercially available in most of the world. As NIPT is being introduced globally, its clinical implementation should consider various challenges, including the role of the surrounding social and cultural contexts. We conducted a qualitative study with healthcare professionals in Lebanon (...) and Quebec as case studies, to highlight the relevance of cultural contexts and to explore the concerns that should be taken into account for an ethical implementation of NIPT.MethodsWe conducted semi-structured interviews with 20 healthcare professionals (HCPs), 10 from each country, practicing in the field of prenatal screening and follow up diagnostic testing, including obstetricians and gynecologists, nurses, medical geneticists and, genetic counselors. We aimed to 1) explore HCPs’ perceptions and views regarding issues raised by NIPT and 2) to shed light on ways in which the introduction of the same technology (NIPT) in two different contexts (Lebanon and Quebec) raises common and different challenges that are influenced by the cultural norms and legal policies in place.ResultsWe identified challenges to the ethical implementation of NIPT. Some are common to both contexts, including financial/economic, social, and organizational/ educational challenges. Others are specific to each context. For example, challenges for Lebanon include abortion policy and financial profit, and in Quebec challenges include lobbying by Disability rights associations and geographical access to NIPT.ConclusionsOur findings highlight the need to consider specific issues related to various cultural contexts when developing frameworks that can guide an ethically sound implementation of NIPT. Further, they show that healthcare professional education and training remain paramount in order to provide NIPT counseling in a way that supports pregnant women and couples’ choice. (shrink)

We show that the following property (LN) holds in the basic Cohen model as sketched by Jech: The order topology of any linearly ordered set is normal. This proves the independence of the axiom of choice from LN in ZF, and thus settles a question raised by G. Birkhoff (1940) which was partly answered by van Douwen (1985).

Research integrity is a continuously developing concept, and increasing emphasis is put on creating RI promotion practices. This study aimed to map the existing RI guidance documents at research performing organisations and research funding organisations. A search of bibliographic databases and grey literature sources was performed, and retrieved documents were screened for eligibility. The search of bibliographical databases and reference lists of selected articles identified a total of 92 documents while the search of grey literature sources identified 118 documents for (...) analysis. The retrieved documents were analysed based on their geographical origin, research field and organisational origin of RI practices, types of guidance presented in them, and target groups to which RI practices are directed. Most of the identified practices were developed for research in general, and are applicable to all research fields and medical sciences. They were mostly written in the form of guidelines and targeted researchers. A comprehensive search of the existing RI promotion practices showed that initiatives mostly come from RPOs while only a few RI practices originate from RFOs. This study showed that more RI guidance documents are needed for natural sciences, social sciences, and humanities since only a small number of documents was developed specifically for these research fields. The explored documents and the gaps in knowledge identified in this study can be used for further development of RI promotion practices in RPOs and RFOs. (shrink)

Teaching responsible conduct of research (RCR) to PhD students is crucial for fostering responsible research practice. In this paper, we show how the use of Moral Case Deliberation—a case reflection method used in the Amsterdam UMC RCR PhD course—is particularity valuable to address three goals of RCR education: (1) making students aware of, and internalize, RCR principles and values, (2) supporting reflection on good conduct in personal daily practice, and (3) developing students’ dialogical attitude and skills so that they can (...) deliberate on RCR issues when they arise. What makes this method relevant for RCR education is the focus on values and personal motivations, the structured reflection on real experiences and dilemmas and the cultivation of participants’ dialogical skills. During these structured conversations, students reflect on the personal motives that drive them to adhere to the principles of good science, thereby building connections between those principles and their personal values and motives. Moreover, by exploring personal questions and dilemmas related to RCR, they learn how to address these with colleagues and supervisors. The reflection on personal experiences with RCR issues and questions combined with the study of relevant normative frameworks, support students to act responsibly and to pursue RCR in their day-to-day research practice in spite of difficulties and external constraints. (shrink)

To foster research integrity (RI), research institutions should develop a continuous RI education approach, addressing various target groups. To support institutions to achieve this, we developed RI education guidelines together with RI experts and research administrators, exploring similarities and differences in recommendations across target groups, as well as recommendations about RI education using approaches other than formal RI training. We used an iterative co-creative process. We conducted four half-day online co-creation workshops with 16 participants in total, which were informed by (...) the RI education evidence-base. In the first two workshops, participants generated ideas for guidelines’ content, focusing on different target groups and various approaches to RI education. Based on this content we developed first drafts of the guidelines. Participants in the third and fourth workshop refined those drafts. We next organized a working group which further prioritized, reorganized, and optimized the content of the guidelines. We developed four guidelines on RI education focusing on (a) bachelor, master and PhD students; (b) post-doctorate and senior researchers; (c) other RI stakeholders; as well as (d) continuous RI education. Across guidelines, we recommend mandatory RI training; follow-up refresher training; informal discussions about RI; appropriate rewards and incentives for active participation in RI education; and evaluation of RI educational events. Our work provides experience-based co-created guidance to research institutions on what to consider when developing a successful RI education strategy. Each guideline is offered as a distinct, publicly available tool in our toolbox (www.sops4ri.eu/toolbox) which institutions can access, adapt and implement to meet their institution-specific RI education needs.Trial registrationhttps://osf.io/zej5b. (shrink)

BackgroundBiobanks have recently been established in several low- and middle-income countries 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.MethodsIn-depth semi-structured qualitative interviews were conducted with a purposive sample of eight biobank managers from Egypt, Jordan, and Sudan. 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.ResultsBiobank 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.ConclusionManagers 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. (shrink)

Let equation image denote the inverse limit of all finite cyclic groups. Let F, G and H be abelian groups with H ≤ G. Let FβH denote the abelian group , where +βis defined by +β = + β — β) for a certain β : F → G linear mod H meaning that β = 0 and β + β — β ∈ H for all a, b in F. In this paper we show that the following hold: The (...) additive group of any nonstandard model ℤ* of the ring ℤ is isomorphic to βH for a certain β : ℤ*+/H → equation image linear mod H. equation image is isomorphic to βH for some β : equation image/H →ℚ linear mod H, though equation image is not the additive group of any model of Th and the exact sequence H → equation image → equation image/H is not splitting. (shrink)

Biobanking is a relatively new concept in Egypt. Building a good relationship with different stakeholders is essential for the social sustainability of biobanks. To establish this relationship, it is necessary to assess the attitude of different groups towards this concept. The objective of this work is to assess the knowledge, attitude, and opinions of Egyptian patients towards biobanking issues. We designed a structured survey to be administered to patients coming to the outpatient clinics in 3 university hospitals in Egypt. The (...) survey included questions estimating the level of knowledge about the term “Biobank”, together with questions about the attitudes and opinions about related issues. Two hundred and fifty-nine patients participated in the survey. Eighty-one percent of participants reported that they never heard about the term before. About 85% expressed that they would be willing to donate their samples for research and about 87% thought that sample donation did not contradict their religious beliefs. Fifty eight percent were willing to participate in a genetic research project, 27.8% supported sharing their sample with pharmaceutical companies, and 32.4% agreed to share their samples with institutions abroad. Although there is limited knowledge about biobanking among Egyptian patients, many had a positive attitude towards sample donation and didn’t show religious concerns against it. However, they showed concerns regarding participation in genetic research and with sharing their samples across borders or with pharmaceutical companies. Public education about biobanking is possible, taking into consideration the specific cultural and legal framework in Egypt. (shrink)

To foster research integrity (RI), it is necessary to address the institutional and system-of-science factors that influence researchers’ behavior. Consequently, research performing and research funding organizations (RPOs and RFOs) could develop comprehensive RI policies outlining the concrete steps they will take to foster RI. So far, there is no consensus on which topics are important to address in RI policies. Therefore, we conducted a three round Delphi survey study to explore which RI topics to address in institutional RI policies by (...) seeking consensus from research policy experts and institutional leaders. A total of 68 RPO and 52 RFO experts, representing different disciplines, countries and genders, completed one, two or all rounds of the study. There was consensus among the experts on the importance of 12 RI topics for RPOs and 11 for RFOs. The topics that ranked highest for RPOs concerned education and training, supervision and mentoring, dealing with RI breaches, and supporting a responsible research process (e.g. through quality assurance). The highest ranked RFO topics concerned dealing with breaches of RI, conflicts of interest, and setting expectations on RPOs (e.g. about educating researchers about RI). Together with the research policy experts and institutional leaders, we developed a comprehensive overview of topics important for inclusion in the RI policies of RPOs and RFOs. The topics reflect preference for a preventative approach to RI, coupled with procedures for dealing with RI breaches. RPOs and RFOs should address each of these topics in order to support researchers in conducting responsible research. (shrink)

Unfounded—conspiracy and health—beliefs about COVID-19 have accompanied the pandemic worldwide. Here, we examined cross-nationally the structure and correlates of these beliefs with an 8-item scale, using a multigroup confirmatory factor analysis. We obtained a two-factor model of unfounded (conspiracy and health) beliefs with good internal structure (average CFI = 0.98, RMSEA = 0.05, SRMR = 0.04), but a high correlation between the two factors (average latent factor correlation = 0.57). This model was replicable across 50 countries (total N = 13,579), (...) as evidenced by metric invariance between countries (CFI = 0.96, RMSEA = 0.06, SRMS = 0.07) as well as scalar invariance across genders (CFI = 0.98, RMSEA = 0.04, SRMS = 0.03) and educational levels (CFI = 0.98, RMSEA = 0.04, SRMS = 0.03). Also, lower levels of education, more fear of COVID-19, and more cynicism were weakly associated with stronger conspiracy and health beliefs. The study contributes to knowledge about the structure of unfounded beliefs, and reveals the potential relevance of affective (i.e., fear of COVID-19) and cognitive (i.e., cynicism) factors along with demographics, in endorsing such beliefs. In summary, we obtained cross-cultural evidence for the distinctiveness of unfounded conspiracy and health beliefs about COVID-19 in terms of their structure and correlates. (shrink)

Unfounded—conspiracy and health—beliefs about COVID-19 have accompanied the pandemic worldwide. Here, we examined cross-nationally the structure and correlates of these beliefs with an 8-item scale, using a multigroup confirmatory factor analysis. We obtained a two-factor model of unfounded (conspiracy and health) beliefs with good internal structure (average CFI = 0.98, RMSEA = 0.05, SRMR = 0.04), but a high correlation between the two factors (average latent factor correlation = 0.57). This model was replicable across 50 countries (total N = 13,579), (...) as evidenced by metric invariance between countries (CFI = 0.96, RMSEA = 0.06, SRMS = 0.07) as well as scalar invariance across genders (CFI = 0.98, RMSEA = 0.04, SRMS = 0.03) and educational levels (CFI = 0.98, RMSEA = 0.04, SRMS = 0.03). Also, lower levels of education, more fear of COVID-19, and more cynicism were weakly associated with stronger conspiracy and health beliefs. The study contributes to knowledge about the structure of unfounded beliefs, and reveals the potential relevance of affective (i.e., fear of COVID-19) and cognitive (i.e., cynicism) factors along with demographics, in endorsing such beliefs. In summary, we obtained cross-cultural evidence for the distinctiveness of unfounded conspiracy and health beliefs about COVID-19 in terms of their structure and correlates. (shrink)