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Advances in the field of human stem cells are often a source of public and ethical controversy. Researchers must frequently balance diverse societal perspectives on questions of morality with the pursuit of medical therapeutics and innovation. Recent developments in brain organoids make this challenge even more acute. Brain organoids are a new class of brain surrogate generated from human pluripotent stem cells (hPSCs). They have gained traction as a model for studying the intricacies of the human brain by using advancements in stem cell biology to recapitulate aspects of the developing human brain in vitro. However, recent observation of neural oscillations spontaneously emerging from these organoids raises the question of whether brain organoids are or could become conscious. At the same time, brain organoids offer a potentially unique opportunity to scientifically understand consciousness. To address these issues, experimental biologists, philosophers, and ethicists united to discuss the possibility of consciousness in human brain organoids and the consequent ethical and moral implications.
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Estado de Consciência , Células-Tronco Pluripotentes , Humanos , Status Moral , Encéfalo , OrganoidesRESUMO
In recent years, the changing landscape for the conduct and assessment of research and of researchers has increased scrutiny of the reward systems of science. In this context, correcting the research record, including retractions, has gained attention and space in the publication system. One question is the possible influence of retractions on the careers of scientists. It might be assessed, for example, through citation patterns or productivity rates for authors who have had one or more retractions. This is an emerging issue today, with growing discussions in the research community about impact. We have explored the influence of retractions on grant review criteria. Here, we present results of a qualitative study exploring the views of a group of six representatives of funding agencies from different countries and of a follow-up survey of 224 reviewers in the US. These reviewers have served on panels for the National Science Foundation, the National Institutes of Health, and/or a few other agencies. We collected their perceptions about the influence of self-correction of the literature and of retractions on grant decisions. Our results suggest that correcting the research record, for honest error or misconduct, is perceived as an important mechanism to strengthen the reliability of science, among most respondents. However, retractions and self-correcting the literature at large are not factors influencing grant review, and dealing with retractions in reviewing grants is an open question for funders.
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Pesquisa Biomédica , Má Conduta Científica , Estados Unidos , Reprodutibilidade dos Testes , National Institutes of Health (U.S.) , Organização do FinanciamentoRESUMO
Background. The community health worker (CHW) model is utilized globally to promote health and reduce health disparities in hard-to-reach and underserved communities. The model is deemed successful due to involvement of these natural helpers who are familiar with the local customs, language, and traditions. "Research" CHWs (also known as promotores) serve as cultural mediators between their community and academic researchers and are increasingly involved in the design and implementation of research; yet few of these individuals have received formal training in research methods or ethics. This study identified requisite skills and knowledge needed by research CHWs. Method. Investigators who utilized the CHW/promotor model were recruited to complete a survey and participate in one of four focus group sessions. Participants identified (1) research roles, (2) training received, (3) research competencies, (4) training barriers and facilitators, and (5) assessment preferences. Results. Participants (n = 20) completed a survey with 19 also participating in a focus group session. All participants involved CHWs in research implementation, with nearly half involving CHWs in the study design and/or dissemination of findings phases. Critical thinking skills and application of ethical principles (e.g., demonstrating respect) were prioritized over knowledge of research infrastructure (e.g., institutional review board/ethics review process). Research ethics training designed for academic researchers was deemed inappropriate because sophisticated terminology and web-based delivery were perceived as an access barrier. Self-assessment and contextualized scenarios were recommended to assess critical thinking. Conclusions. Researchers using the CHW model should provide relevant and accessible research competency training.
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Agentes Comunitários de Saúde , Promoção da Saúde , Grupos Focais , HumanosRESUMO
In order to increase understanding of the ethical implications of biomedical, behavioral and clinical research, the Fogarty International Center, part of the United States National Institutes of Health, established an International Research Ethics Education and Curriculum Development Award (R25) to support programs in low- and middle-income countries. To develop research ethics expertise in Jordan, the University of California San Diego fellowship program in collaboration with Jordan University of Science and Technology provides courses that enable participants to develop skills in varied research ethics topics, including research with human subjects. The program provides a master's level curriculum, including practicum experiences. In this article we describe a practicum project to modify an existing introduction to human subjects research for a US audience to be linguistically and culturally appropriate to Arabic-speaking-Islamic communities. We also highlight key differences that guided the conversion of an English version to one that is in Arabic. And finally, as Institutional Review Boards follow the ethical principles of the Belmont Report in evaluating and approving biomedical and behavioral human subjects research proposals, we provide observations on the conformity of the three ethical principles of the Belmont Report with Islam.
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Pesquisa Biomédica/ética , Currículo , Educação Profissionalizante/métodos , Ética em Pesquisa/educação , Experimentação Humana/ética , Islamismo , Pesquisadores/ética , Árabes , Pesquisa Biomédica/educação , California , Cultura , Países em Desenvolvimento , Comitês de Ética em Pesquisa , Humanos , Cooperação Internacional , Jordânia , Idioma , Resolução de Problemas , Religião e Medicina , Projetos de Pesquisa , Pesquisadores/educação , Sujeitos da Pesquisa , UniversidadesRESUMO
Although much of the focus on responsible conduct in research has been defined by courses or online training, it is generally understood that this is less important than what happens in the research environment. On the assumption that providing faculty with tools and resources to address the ethical dimensions of the practice of research would be useful, a new workshop was convened ten times across seven academic institutions and at the annual meeting of a professional society. Workshops were attended by 91 faculty, 71 (78% response rate) of whom completed evaluations strongly supportive of the value of the workshop. Surveys of trainees identified by the faculty allowed for invitations to complete an online survey before and 6 months after the workshops, respectively resulting in response rates of 43 and 51%. Faculty and trainees were highly supportive of the feasibility, relevance, and effectiveness of the implementation by the faculty of one or more of the five strategies featured in the workshop. However, surprisingly over 70% of the trainees reported use of one or more of those strategies prior to faculty participation in the workshops. In sum, the workshops for faculty were successful, and the proposed strategies were deemed of value, but it is likely that the faculty voluntarily choosing to participate in these workshops were perhaps not surprisingly faculty who are already engaging in some of these strategies. This model is likely a useful adjunct to encouraging a culture of ethics, but it is not by itself sufficient to do so.
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Currículo , Ética em Pesquisa/educação , Docentes , Tutoria , Pesquisa/educação , Ensino , Universidades , Humanos , Mentores , Inquéritos e QuestionáriosRESUMO
Despite more than 25 years of a requirement for training in the responsible conduct of research (RCR), there is still little consensus about what such training should include, how it should be delivered, nor what constitutes "effectiveness" of such training. This lack of consensus on content, approaches and outcomes is evident in recent data showing high variability in the development and implementation of RCR instruction across universities and programs. If we accept that one of the primary aims of instruction in RCR/research ethics is "to foster a community of social responsibility" (Antes et al. 2009: 398), then it makes sense to consider the research environment itself-where learning one's science happens where one also engages in social interaction around that science. In order to take the best advantage of that already existing/naturally occurring research environment, the authors, through a deliberative, collaborative, and integrative process, crafted a workshop curriculum meant to arm research faculty with concrete and specific tools to effectively introduce research ethics in the context of the research environment.
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Pesquisa Biomédica/ética , Currículo , Ética em Pesquisa/educação , Tutoria , Pesquisadores/educação , Responsabilidade Social , Ensino , Docentes , Humanos , Relações Interpessoais , Mentores , Pesquisa , Ciência/educação , UniversidadesRESUMO
BACKGROUND: Members of the public are increasingly engaged in health-service and biomedical research and provide input into the content of research, design and data sharing. As there is variation among different communities on how research is perceived, to engage all sectors of the general public research institutions need to customize their approach. OBJECTIVE: This paper explores how research institutions and community leaders can partner to determine the best ways to engage different sectors of the public in research. DESIGN: Following a literature review, a research institution engaged with four different sectors of the public through their respective representative community-based organizations (CBOs) by interviews with leaders, community member focus groups and a joint project. SETTING: San Diego and Imperial Counties, California, United States of America (USA). CONCLUSION: Before embarking on more specific research projects, investigators can gain valuable insights about different communities' attitudes to, and understanding of, health services and biomedical research by interacting directly with members of the community, collaborating with community leaders, and jointly identifying steps of engagement tailored to the community.
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Participação da Comunidade , Pesquisa sobre Serviços de Saúde , California , Participação da Comunidade/métodos , Grupos Focais , Humanos , Entrevistas como AssuntoRESUMO
Teaching of responsible conduct of research is largely predicated on the assumption that there are accepted standards of conduct that can be taught. However there is little evidence of consensus in the scientific community about such standards, at least for the practices of authorship, collaboration, and data management. To assess whether such differences in standards are based on disciplinary differences, a survey, described previously, addressing standards, practices, and perceptions about teaching and learning was distributed in November 2010 to US faculty from 50 graduate programs for the biomedical disciplines of microbiology, neuroscience, nursing, and psychology. Despite evidence of statistically significant differences across the four disciplines, actual differences were quite small. Stricter measures of effect size indicated practically significant disciplinary differences for fewer than 10% of the questions. This suggests that the variation in individual standards of practice within each discipline is at least as great as variation due to differences among disciplines. Therefore, the need for discipline-specific training may not be as important as sometimes thought.
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Pesquisa Biomédica/ética , Consenso , Ética em Pesquisa/educação , Microbiologia/ética , Neurociências/ética , Psicologia/ética , Autoria , Pesquisa Biomédica/educação , Comportamento Cooperativo , Humanos , Microbiologia/educação , Neurociências/educação , Pesquisa em Enfermagem/educação , Pesquisa em Enfermagem/ética , Psicologia/educação , Inquéritos e Questionários , Estados UnidosRESUMO
The practice of research is full of ethical challenges, many of which might be addressed through the teaching of responsible conduct of research (RCR). Although such training is increasingly required, there is no clear consensus about either the goals or content of an RCR curriculum. The present study was designed to assess community standards in three domains of research practice: authorship, collaboration, and data management. A survey, developed through advice from content matter experts, focus groups, and interviews, was distributed in November 2010 to U.S. faculty from 50 graduate programs for each of four different disciplines: microbiology, neuroscience, nursing, and psychology. The survey addressed practices and perceived standards, as well as perceptions about teaching and learning. Over 1,300 responses (response rate of 21 %) yielded statistically significant differences in responses to nearly all questions. However the magnitude of these differences was typically small, leaving little reason to argue for community consensus on standards. For nearly all questions asked, the clear finding was that there was nothing approaching consensus. These results may be useful not so much to teach what the standards are, but to increase student awareness of the diversity of those standards in reported practice.
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Autoria , Comportamento Cooperativo , Currículo/normas , Educação de Pós-Graduação/normas , Ética em Pesquisa/educação , Projetos de Pesquisa , Ciência/ética , Coleta de Dados , Educação de Pós-Graduação em Enfermagem , Docentes , Grupos Focais , Humanos , Entrevistas como Assunto , Aprendizagem , Microbiologia/educação , Neurociências/educação , Psicologia/educação , Características de Residência , Ciência/educação , Ciência/normas , Inquéritos e Questionários , Ensino , Estados UnidosRESUMO
Community health workers (CHWs) are increasingly incorporated into research teams. Training them in research methodology and ethics, while relating these themes to a community's characteristics, may help to better integrate these health promotion personnel into research teams. An interactive training course on research fundamentals for CHWs was designed and implemented jointly by a community agency serving a primarily Latino, rural population and an academic health center. A focus group of community members and input from community leaders comprised a community-based participatory research model to create three 3-hour interactive training sessions. The resulting curriculum was interactive and successfully stimulated dialogue between trainees and academic researchers. By choosing course activities that elicited community-specific responses into each session's discussion, researchers learned about the community as much as the training course educated CHWs about research. The approach is readily adaptable, making it useful to other communities where CHWs are part of the health system.
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Agentes Comunitários de Saúde/educação , Relações Comunidade-Instituição , Promoção da Saúde/organização & administração , Pesquisa sobre Serviços de Saúde/organização & administração , Universidades , Pesquisa Participativa Baseada na Comunidade , Comportamento Cooperativo , Hispânico ou Latino , Humanos , Estudos de Casos Organizacionais , Aprendizagem Baseada em Problemas , População Rural , Desenvolvimento de Pessoal/organização & administraçãoRESUMO
Advances in neuroscience continue to enhance understanding of the brain and provide new tools to take advantage of that understanding. These changes are poised to profoundly alter society. Given that the impact will be felt not only by neuroscientists, but by diverse members of society, it is imperative that conversations engage all stakeholders. Doing so will allow for the sharing of diverse views and perspectives to understand and frame the science, better educate and prepare the public for new developments, and provide a shared approach to identifying and resolving ethical challenges. These were the goals of Neuroethics Week, staged in 2007 by the Center for Ethics in Science and Technology in San Diego, and are the basis for the contributions to this special issue of Science and Engineering Ethics.
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Encéfalo , Princípios Morais , Neurociências/ética , Ciência/ética , Humanos , Tecnologia/éticaRESUMO
In February of 2007, the Responsible Conduct of Research Education Committee of the Association for Practical and Professional Ethics convened a mini-conference at the Association's annual meeting. The purpose of the mini-conference was to examine underserved areas of education in research ethics. The mini-conference consisted of panel discussions for two topics: authorship and social responsibility. Representatives from diverse academic disciplines were invited to participate in each of the two panels. This Special Section of Science and Engineering Ethics consists of the papers based on presentations in the authorship panel. The papers illustrate similarities and differences in authorship and publication practices in various disciplines including engineering, the life sciences, and the social sciences.
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Autoria , Engenharia/educação , Ética Profissional , Ética em Pesquisa/educação , Ciência/educação , Engenharia/ética , Ciência/ética , Má Conduta Científica , Estados UnidosAssuntos
Agentes Comunitários de Saúde/educação , Currículo , Ética em Pesquisa/educação , Promoção da Saúde , Hispânico ou Latino , Consentimento Livre e Esclarecido/ética , Pesquisadores/educação , Agentes Comunitários de Saúde/ética , Agentes Comunitários de Saúde/normas , Agentes Comunitários de Saúde/tendências , Características Culturais , Currículo/normas , Currículo/tendências , Educação Profissionalizante/métodos , Educação Profissionalizante/normas , Educação Profissionalizante/tendências , Humanos , Avaliação das Necessidades , Pesquisa , Pesquisadores/ética , Pesquisadores/normas , Pesquisadores/tendências , Estados UnidosRESUMO
BACKGROUND: Research on research integrity has tended to focus on frequency of research misconduct and factors that might induce someone to commit research misconduct. A definitive answer to the first question has been elusive, but it remains clear that any research misconduct is too much. Answers to the second question are so diverse, it might be productive to ask a different question: What about how research is done allows research misconduct to occur? METHODS: With that question in mind, research integrity officers (RIOs) of the 62 members of the American Association of Universities were invited to complete a brief survey about their most recent instance of a finding of research misconduct. Respondents were asked whether one or more good practices of research (e.g., openness and transparency, keeping good research records) were present in their case of research misconduct. RESULTS: Twenty-four (24) of the respondents (39% response rate) indicated they had dealt with at least one finding of research misconduct and answered the survey questions. Over half of these RIOs reported that their case of research misconduct had occurred in an environment in which at least nine of the ten listed good practices of research were deficient. CONCLUSIONS: These results are not evidence for a causal effect of poor practices, but it is arguable that committing research misconduct would be more difficult if not impossible in research environments adhering to good practices of research.
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In recent years, concern about research reproducibility has increased dramatically for scientists, funders of research, and the general public. With a view to explicitly address what is often called a reproducibility crisis and putting the focus on research being done by individual trainees, a two-hour workshop was developed and introduced into six courses at UC San Diego. Participation in the workshop resulted in a statistically significant increase in the number of different types of strategies identified by the trainees for fostering reproducibility. The findings are consistent with having increased awareness of strategies to promote reproducibility.
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Preparation to address ethical challenges is an essential component of graduate training, and no less so for the psychological sciences. However, in the absence of uniform guidelines, approaches to training vary in form and quality. Classroom lectures and online training seem to be the mechanisms of choice, but these fall short. First, such approaches conflict with the scholarship on teaching and learning that makes it clear that having a meaningful impact depends on having students actively engaged in constructing their own learning. Second, research is consistent with intuition that the impact of courses is likely to be far less than what happens in a graduate student's research environment. The conclusion is that promoting an ethical culture, and for the training of graduate students in particular, will be well served by enhancing the role of mentors. Examples of options to consider are: (1) recognizing that a primary advisor can be a mentor, but should certainly not be considered the only mentor; (2) emphasizing the importance of mentoring for individuals from underrepresented groups (e.g., because of gender or ethnicity); (3) strengthening the APA code of ethics to more fully articulate the full range and importance of mentoring; (4) developing and implementing mechanisms to evaluate and reward effective mentoring; and (5) providing targeted training for faculty advisors to empower them with tools and resources to be effective mentors for ethics generally and the responsible conduct of research specifically.
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In 2017, the University of Hong Kong and the University of California San Diego co-hosted the first Asian meeting of the recently formed Asia Pacific Research Integrity (APRI) network in Hong Kong. Aligned with planning meetings in 2015 and 2016 funded in part by the US Office of Research Integrity (ORI), the Hong Kong meeting was designed by a multi-national planning committee to address pressing challenges in research integrity: improving multi-national communication; exchanging information on managing misconduct investigations; and sharing best practices to promote research integrity. To create a sustainable, robust international partnership to promote research integrity in the region, the purpose of this 2017 meeting was to foster multi-national awareness, understanding, and opportunities for collaboration. The meeting was defined by four objectives that emerged from the previous meetings: (1) Articulate differences as well as areas of common ground; (2) Identify best or recommended practices; (3) Identify opportunities for research or collaboration; and (4) Set an APRI network agenda for coming years. The key anticipated outcome was to advance the conversation surrounding research integrity among academic institutions and regulators in Asian and Pacific Rim nations. This outcome was evidenced by meeting participation, participant satisfaction, and articulation of next steps for the APRI network.
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Congressos como Assunto/organização & administração , Ética em Pesquisa , Comportamento Cooperativo , Hong Kong , HumanosRESUMO
Advances in our understanding of the control of early human embryonic development could offer solutions to the moral dilemmas associated with human embryonic stem cell research.
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Pesquisas com Embriões/ética , Ética Médica , Ciência/ética , Transplante de Células-Tronco/ética , Células-Tronco , InternacionalidadeRESUMO
Background: Molecular epidemiology (ME) is a technique used to study the dynamics of pathogen transmission through a population. When used to study HIV infections, ME generates powerful information about how HIV is transmitted, including epidemiologic patterns of linkage and, potentially, transmission direction. Thus, ME raises challenging questions about the most responsible way to protect individual privacy while acquiring and using these data to advance public health and inform HIV intervention strategies. Here, we report on stakeholders' expectations for how researchers and public health agencies might use HIV ME. Methods: We conducted in-depth semistructured interviews with 40 key stakeholders to find out how these individuals respond to the proposed risks and benefits of HIV ME. Transcripts were coded and analyzed using Atlas.ti. Expectations were assessed through analysis of responses to hypothetical scenarios designed to help interviewees think through the implications of this emerging technique in the contexts of research and public health. Results: Our analysis reveals a wide range of imagined responsibilities, capabilities, and trustworthiness of researchers and public health agencies. Specifically, many respondents expect researchers and public health agencies to use HIV ME carefully and maintain transparency about how data will be used. Informed consent was discussed as an important opportunity for notification of privacy risks. Furthermore, some respondents wished that public health agencies were held to the same form of oversight and accountability represented by informed consent in research. Conclusions: To prevent HIV ME from becoming a barrier to testing or a source of public mistrust, the sense of vulnerability expressed by some respondents must be addressed. In research, informed consent is an obvious opportunity for this. Without giving specimen donors a similar opportunity to opt out, public health agencies may find it difficult to adopt HIV ME without deterring testing and treatment.