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1.
J Pediatr ; 265: 113840, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38000771

RESUMEN

OBJECTIVE: To identify practices that add value to improve the design, conduct, and reporting of child health research and reduce research waste. STUDY DESIGN: In order to categorize the contributions of members of Standards for Research (StaR) in Child Health network, we developed a novel Child Health Improving Research Practices (CHIRP) framework comprised of 5 domains meant to counteract avoidable child health research waste and improve quality: 1) address research questions relevant to children, their families, clinicians, and researchers; 2) apply appropriate research design, conduct and analysis; 3) ensure efficient research oversight and regulation; 4) Provide accessible research protocols and reports; and 5) develop unbiased and usable research reports, including 17 responsible research practice recommendations. All child health research relevant publications by the 48 original StaR standards' authors over the last decade were identified, and main topic areas were categorized using this framework. RESULTS: A total of 247 publications were included in the final sample: 100 publications (41%) in domain 1 (3 recommendations), 77 publications (31%) in domain 2 (3), 35 publications (14%) in domain 3 (4), 20 publications (8%) in domain 4 (4), and 15 publications (6%) in domain 5 (3). We identified readily implementable "responsible" research practices to counter child health research waste and improve quality, especially in the areas of patients and families' engagement throughout the research process, developing Core Outcome Sets, and addressing ethics and regulatory oversight issues. CONCLUSION: While most of the practices are readily implementable, increased awareness of methodological issues and wider guideline uptake is needed to improve child health research. The CHIRP Framework can be used to guide responsible research practices that add value to child health research.


Asunto(s)
Salud Infantil , Proyectos de Investigación , Niño , Humanos
2.
Eur J Epidemiol ; 39(2): 183-206, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38324224

RESUMEN

The Rotterdam Study is a population-based cohort study, started in 1990 in the district of Ommoord in the city of Rotterdam, the Netherlands, with the aim to describe the prevalence and incidence, unravel the etiology, and identify targets for prediction, prevention or intervention of multifactorial diseases in mid-life and elderly. The study currently includes 17,931 participants (overall response rate 65%), aged 40 years and over, who are examined in-person every 3 to 5 years in a dedicated research facility, and who are followed-up continuously through automated linkage with health care providers, both regionally and nationally. Research within the Rotterdam Study is carried out along two axes. First, research lines are oriented around diseases and clinical conditions, which are reflective of medical specializations. Second, cross-cutting research lines transverse these clinical demarcations allowing for inter- and multidisciplinary research. These research lines generally reflect subdomains within epidemiology. This paper describes recent methodological updates and main findings from each of these research lines. Also, future perspective for coming years highlighted.


Asunto(s)
Personal de Salud , Anciano , Humanos , Adulto , Persona de Mediana Edad , Estudios de Cohortes , Países Bajos/epidemiología
3.
Ergonomics ; : 1-19, 2024 Sep 16.
Artículo en Inglés | MEDLINE | ID: mdl-39285689

RESUMEN

The origins of Human Factors (HF) are rooted in the Second World War. It is a sign of the times that 75 years on from the formation of the Ergonomics Research Society, discussions occur as to whether Artificial Intelligence (AI) could/should be capable of controlling weaponry in a theatre of war. HF can support the design of safe, ethical, and usable AI: but there is little evidence of HF influencing industrial organisations developing AI. A review of the history of HF was conducted to understand how the influence of discipline on AI development may be optimised. The field may need to become broader and more inclusive, given the potential implications of innovation such as AI. The field of Responsible Research and Innovation can help the HF Practitioner ensure that the design and application of AI based technology serves to improve human well-being and optimise system performance over the next 75 years.Practitioner summary: A review of the history and origins of Human Factors was conducted. The review aimed to learn from the development of the discipline over the last 75 years to provide insights of what can be done to optimise the influence of HF to design safe, ethical, and usable artificial intelligence.

4.
Can J Microbiol ; 69(1): 62-71, 2023 Jan 01.
Artículo en Inglés | MEDLINE | ID: mdl-36476036

RESUMEN

To reduce biological risks, raising awareness for dual-use issues already at the level of university education is essential. Currently, most life sciences education programs do not incorporate biosecurity and dual-use in their regular curricula. Consequently, the responsibility rests with individual lecturers and depends on their initiative to incorporate dual-use topics into teaching activities. Students interested in biosecurity and dual-use topics often only have the option to educate themselves in external or online courses. Here, we provide practical guidance on how to initiate and integrate a dual-use education program within the curriculum and provide a selection of existing teaching materials. In addition, we suggest key learning objectives to guide the planning of dual-use courses. Different course formats like lectures, seminars, or stand-alone events are discussed regarding their advantages, disadvantages, and suitability for conveying the learning objectives to different educational stages and audiences. As a minimum, we recommend the incorporation of dual-use issues into at least one mandatory course. Ideally, students should additionally participate in in-depth seminars, which can be voluntary and offered in cooperation with external organisations.


Asunto(s)
Disciplinas de las Ciencias Biológicas , Curriculum , Humanos , Estudiantes , Disciplinas de las Ciencias Biológicas/educación
5.
J Med Internet Res ; 25: e48496, 2023 08 28.
Artículo en Inglés | MEDLINE | ID: mdl-37639297

RESUMEN

BACKGROUND: Clinicians' scope of responsibilities is being steadily transformed by digital health solutions that operate with or without artificial intelligence (DAI solutions). Most tools developed to foster ethical practices lack rigor and do not concurrently capture the health, social, economic, and environmental issues that such solutions raise. OBJECTIVE: To support clinical leadership in this field, we aimed to develop a comprehensive, valid, and reliable tool that measures the responsibility of DAI solutions by adapting the multidimensional and already validated Responsible Innovation in Health Tool. METHODS: We conducted a 3-phase mixed methods study. Relying on a scoping review of available tools, phase 1 (concept mapping) led to a preliminary version of the Responsible DAI solutions Assessment Tool. In phase 2, an international 2-round e-Delphi expert panel rated on a 5-level scale the importance, clarity, and appropriateness of the tool's components. In phase 3, a total of 2 raters independently applied the revised tool to a sample of DAI solutions (n=25), interrater reliability was measured, and final minor changes were made to the tool. RESULTS: The mapping process identified a comprehensive set of responsibility premises, screening criteria, and assessment attributes specific to DAI solutions. e-Delphi experts critically assessed these new components and provided comments to increase content validity (n=293), and after round 2, consensus was reached on 85% (22/26) of the items surveyed. Interrater agreement was substantial for a subcriterion and almost perfect for all other criteria and assessment attributes. CONCLUSIONS: The Responsible DAI solutions Assessment Tool offers a comprehensive, valid, and reliable means of assessing the degree of responsibility of DAI solutions in health. As regulation remains limited, this forward-looking tool has the potential to change practice toward more equitable as well as economically and environmentally sustainable digital health care.


Asunto(s)
Inteligencia Artificial , Liderazgo , Humanos , Reproducibilidad de los Resultados , Consenso , Investigadores
6.
Int J Health Plann Manage ; 38(4): 967-985, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-36992612

RESUMEN

AIM: To foster equity and make health systems economically and environmentally more sustainable, Responsible Innovation in Health (RIH) calls for policy changes advocated by mission-oriented innovation policies. These policies focus, however, on instruments to foster the supply of innovations and neglect health policies that affect their uptake. Our study's aim is to inform policies that can support RIH by gaining insights into RIH-oriented entrepreneurs' experience with the policies that influence both the supply of, and the demand for their innovations. METHODS: We recruited 16 for-profit and not-for-profit organisations engaged in the production of RIH in Brazil and Canada in a longitudinal multiple case study. Our dataset includes three rounds of interviews (n = 48), self-reported data, and fieldnotes. We performed qualitative thematic analyses to identify across-cases patterns. FINDINGS: RIH-oriented entrepreneurs interact with supply side policies that support technology-led solutions because of their economic potential but that are misaligned with societal challenge-led solutions. They navigate demand side policies where market approval and physician incentives largely condition the uptake of technology-led solutions and where emerging policies bring some support to societal challenge-led solutions. Academic intermediaries that bridge supply and demand side policies may facilitate RIH, but our findings point to an overall lack of policy directionality that limits RIH. CONCLUSION: As mission-oriented innovation policies aim to steer innovation towards the tackling of societal challenges, they call for a major shift in the public sector's role. A comprehensive mission-oriented policy approach to RIH requires policy instruments that can align, orchestrate, and reconcile health priorities with a renewed understanding of innovation-led economic development.


Asunto(s)
Programas de Gobierno , Política de Salud , Humanos , Brasil , Canadá , Estudios Longitudinales
7.
Mol Ecol ; 31(20): 5125-5131, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-36214196

RESUMEN

The use of molecular methods in plant systematics and taxonomy has increased during the last decades; however, the accessibility of curated genetic samples and their metadata is a bottleneck for DNA-based genetic studies in botany. Plant biodiversity DNA banks and DNA-friendly collections could be critical suppliers of curated genetic material for researchers in the current context of plant biodiversity loss. Here, we aimed to understand the potential of plant DNA banks and DNA-friendly collections to enhance the growth and openness of scientific knowledge. The preservation of genetic material should become part of a natural collection's process for the generation of extended specimens enabling the preservation of both the phenotype and genotype and contributing to the generation of data networks which cross-fertilize other fields. These curated collections are advantageous in endangered species research, detecting processes related to extinction, giving a genetic dimension to IUCN assessments or completing the Leipzig Catalogue of Vascular Plants. Therefore, DNA collections are fundamental in producing FAIR data, responsible research and innovation (RRI) and meeting the goals of international conservation programmes. The completion of natural collections is important for current research efforts and furthermore vital to support future research in an era of ongoing plant biodiversity loss.


Asunto(s)
Botánica , Ecología , Animales , Biodiversidad , Conservación de los Recursos Naturales , ADN de Plantas/genética , Especies en Peligro de Extinción , Plantas/genética
8.
Malar J ; 21(1): 35, 2022 Feb 05.
Artículo en Inglés | MEDLINE | ID: mdl-35123487

RESUMEN

Progress in gene drive research has engendered a lively discussion about community engagement and the ethical standards the work hinges on. While there is broad agreement regarding ethical principles and established best practices for conducting clinical public health research, projects developing area-wide vector control technologies and initiating ambitious engagement strategies raise specific questions: who to engage, when to engage, and how? When responding to these fundamental questions, with few best practices available for guidance, projects need to reflect on and articulate the ethical principles that motivate and justify their approach. Target Malaria is a not-for-profit research consortium that aims to develop and share malaria control and elimination technology. The consortium is currently investigating the potential of a genetic technique called gene drive to control populations of malaria vectoring mosquito species Anopheles gambiae. Due to the potentially broad geographical, environmental impact of gene drive technology, Target Malaria has committed to a robust form of tailored engagement with the local communities in Burkina Faso, Mali, and Uganda, where research activities are currently taking place. This paper presents the principles guiding Target Malaria's engagement strategy. Herein the authors (i) articulate the principles; (ii) explain the rationale for selecting them; (iii) share early lessons about the application of the principles. Since gene drive technology is an emerging technology, with few best practices available for guidance, the authors hope by sharing these lessons, to add to the growing literature regarding engagement strategies and practices for area-wide vector control, and more specifically, for gene drive research.


Asunto(s)
Anopheles , Tecnología de Genética Dirigida , Malaria , Animales , Anopheles/genética , Malaria/prevención & control , Control de Mosquitos , Mosquitos Vectores , Salud Pública
9.
Malar J ; 21(1): 225, 2022 Jul 23.
Artículo en Inglés | MEDLINE | ID: mdl-35870909

RESUMEN

Gene drive mosquitoes are increasingly considered a potential transformational tool for vector control of malaria mosquitoes. As part of efforts to promote responsible research in this field, a number of guidance documents have been published by the World Health Organization, National Academies and expert groups. While virtually all recent guidance documents on gene drive research stress the importance of stakeholder engagement activities, no specific guidelines on implementing them have been established. Target Malaria, a not-for-profit research consortium developing a vector-control gene drive approach to eliminate malaria, has reflected on how its stakeholder engagement strategy translates engagement guidance documents into practice. The project analysed and addressed the tension between the context specificities and the international recommendations. The engagement strategy combines published recommendations for responsible gene drive research, information collected from the local context where the project operates and a set of principles guiding the choices made. This strategy was first developed during the early phases of the project's research, years ahead of any activities with gene drive mosquitoes in those countries of operations. These earlier activities, and their related engagement, allow the project to develop and adapt an engagement strategy appropriate for potential gene drive research in its field site countries. This paper offers a description of a stakeholder engagement strategy operationalization based on (1) adaptation to stakeholder preferences, (2) inclusiveness and (3) empowerment and accountability. The authors hope to offer concrete examples to support other projects with the development and implementation of their engagement strategies with particular attention to the co-development principle.


Asunto(s)
Culicidae , Tecnología de Genética Dirigida , Malaria , África , Animales , Humanos , Malaria/prevención & control , Mosquitos Vectores/genética , Participación de los Interesados
10.
Mar Drugs ; 20(5)2022 Apr 26.
Artículo en Inglés | MEDLINE | ID: mdl-35621941

RESUMEN

As the quest for marine-derived compounds with pharmacological and biotechnological potential upsurges, the importance of following regulations and applying Responsible Research and Innovation (RRI) also increases. This article aims at: (1) presenting an overview of regulations and policies at the international and EU level, while demonstrating a variability in their implementation; (2) highlighting the importance of RRI in biodiscovery; and (3) identifying gaps and providing recommendations on how to improve the market acceptability and compliance of novel Blue Biotechnology compounds. This article is the result of the work of the Working Group 4 "Legal aspects, IPR and Ethics" of the COST Action CA18238 Ocean4Biotech, a network of more than 130 Marine Biotechnology scientists and practitioners from 37 countries. Three qualitative surveys ("Understanding of the Responsible Research and Innovation concept", "Application of the Nagoya Protocol in Your Research", and "Brief Survey about the experiences regarding the Nagoya Protocol") indicate awareness and application gaps of RRI, the Nagoya Protocol, and the current status of EU policies relating to Blue Biotechnology. The article categorises the identified gaps into five main categories (awareness, understanding, education, implementation, and enforcement of the Nagoya Protocol) and provides recommendations for mitigating them at the European, national, and organisational level.


Asunto(s)
Biotecnología
11.
BMC Med Ethics ; 23(1): 37, 2022 04 06.
Artículo en Inglés | MEDLINE | ID: mdl-35387625

RESUMEN

BACKGROUND: Research proactively and deliberately aims to bring about specific changes to how societies function and individual lives fare. However, in the ever-expanding field of ethical regulations and guidance for researchers, one ethical consideration seems to have passed under the radar: How should researchers act when pursuing actual, societal changes based on their academic work? MAIN TEXT: When researchers engage in the process of bringing about societal impact to tackle local or global challenges important concerns arise: cultural, social and political values and institutions can be put at risk, transformed or even hampered if researchers lack awareness of how their 'acting to impact' influences the social world. With today's strong focus on research impacts, addressing such ethical challenges has become urgent within in all fields of research involved in finding solutions to the challenges societies are facing. Due to the overall goal of doing something good that is often inherent in ethical approaches, boundaries to researchers' impact of something good is neither obvious, nor easy to detect. We suggest that it is time for the field of bioethics to explore normative boundaries for researchers' pursuit of impact and to consider, in detail, the ethical obligations that ought to shape this process, and we provide a four-step framework of fair conditions for such an approach. Our suggested approach within this field can be useful for other fields of research as well. CONCLUSION: With this paper, we draw attention to how the transition from pursuing impact within the Academy to trying to initiate and achieve impact beyond the Academy ought to be configured, and the ethical challenges inherent in this transition. We suggest a stepwise strategy to identify, discuss and constitute consensus-based boundaries to this academic activity. This strategy calls for efforts from a multi-disciplinary team of researchers, advisors from the humanities and social sciences, as well as discussants from funding institutions, ethical committees, politics and the society in general. Such efforts should be able to offer new and useful assistance to researchers, as well as research funding agencies, in choosing ethically acceptable, impact-pursuing projects.


Asunto(s)
Bioética , Humanidades , Humanos , Principios Morales , Investigadores , Ciencias Sociales
12.
Health Res Policy Syst ; 20(1): 49, 2022 May 02.
Artículo en Inglés | MEDLINE | ID: mdl-35501895

RESUMEN

BACKGROUND: The need to more collaboratively measure the impact of health research and to do so from multidimensional perspectives has been acknowledged. A scorecard was developed as part of the Collective Research Impact Framework (CRIF), to engage stakeholders in the assessment of the impacts of health research and innovations. The purpose of this study was to describe the developmental process of the MULTI-ACT Master Scorecard (MSC) and how it can be used as a workable tool for collectively assessing future responsible research and innovation measures. METHODS: An extensive review of the health research impact literature and of multistakeholder initiatives resulted in a database of 1556 impact indicators. The MSC was then cocreated by engaging key stakeholders and conducting semi-structured interviews of experts in the field. RESULTS: The MSC consists of five accountability dimensions: excellence, efficacy, economic, social and patient-reported outcomes. The tool contains 125 potential indicators, classified into 53 impact measurement aspects that are considered the most relevant topics for multistakeholder research and innovation initiatives when assessing their impact on the basis of their mission and their stakeholders' interests. The scorecard allows the strategic management of multistakeholder research initiatives to demonstrate their impact on people and society. The value of the tool is that it is comprehensive, customizable and easy to use. CONCLUSIONS: The MSC is an example of how the views of society can be taken into account when research impacts are assessed in a more sustainable and balanced way. The engagement of patients and other stakeholders is an integral part of the CRIF, facilitating collaborative decision-making in the design of policies and research agendas. In policy making, the collective approach allows the evaluation perspective to be extended to the needs of society and towards responsible research and innovation. Multidimensionality makes research and innovations more responsive to systemic challenges, and developing more equitable and sustainable health services.


Asunto(s)
Investigación sobre Servicios de Salud , Formulación de Políticas , Humanos
13.
Health Res Policy Syst ; 20(1): 22, 2022 Feb 17.
Artículo en Inglés | MEDLINE | ID: mdl-35177080

RESUMEN

The COVID-19 pandemic has unmasked even more clearly the need for research and care to form a unique and interdependent ecosystem, a concept which has emerged in recent years. In fact, to address urgent and unexpected missions such as "fighting all together the COVID-19 pandemic", the importance of multi-stakeholder collaboration, mission-oriented governance and flexibility has been demonstrated with great efficacy. This calls for a policy integration strategy and implementation of responsible research and innovation principles in health, promoting an effective cooperation between science and society towards a shared mission. This article describes the MULTI-ACT framework and discusses how its innovative approach, encompassing governance criteria, patient engagement and multidisciplinary impact assessment, represents a holistic management model for structuring responsible research and innovation participatory governance in brain conditions research.


Asunto(s)
COVID-19 , Pandemias , Ecosistema , Humanos , SARS-CoV-2
14.
Sci Eng Ethics ; 28(6): 50, 2022 10 28.
Artículo en Inglés | MEDLINE | ID: mdl-36305955

RESUMEN

An anthropogenic global catastrophic risk is a human-induced risk that threatens sustained and wide-scale loss of life and damage to civilisation across the globe. In order to understand how new research on governance mechanisms for emerging technologies might assuage such risks, it is important to ask how perceptions, beliefs, and attitudes towards the governance of global catastrophic risk within the research community shape the conduct of potentially risky research. The aim of this study is to deepen our understanding of emerging technology research culture as it relates to global catastrophic risks, and to shed new light on how new research governance mechanisms might be developed. We analyse in-depth interviews with leading AI and biotech researchers both from universities and the private sector. We develop new insights in terms of four salient themes. First, 'engineering mindset', which highlights the premium placed by many interviewees on pursuing interesting research about the physical world for its own sake. Second, 'self-government', which looks at how self-regulation of technological development currently occurs. Third, 'pure incentives', focussing on how career and other incentives shapes research. Fourth, 'norms and persuasion', which examines the role of moral considerations in guiding the research choices of scientists. We end by considering the implications of these findings for future research on governance of anthropogenic global catastrophic risk.


Asunto(s)
Actitud , Gobierno , Humanos , Políticas , Investigadores , Sector Privado
15.
Sci Eng Ethics ; 28(1): 6, 2022 01 27.
Artículo en Inglés | MEDLINE | ID: mdl-35084575

RESUMEN

In this paper, we introduce the Societal Readiness (SR) Thinking Tool to aid researchers and innovators in developing research projects with greater responsiveness to societal values, needs, and expectations. The need for societally-focused approaches to research and innovation-complementary to Technology Readiness (TR) frameworks-is presented. Insights from responsible research and innovation (RRI) concepts and practice, organized across critical stages of project-life cycles are discussed with reference to the development of the SR Thinking Tool. The tool is designed to complement not only shortfalls in TR approaches, but also improve upon other efforts to integrate RRI, sustainability, and design thinking in research and innovation cycles. Operationalization and early-stage user tests of the Tool are reported, along with discussion of potential future iterations and applications.


Asunto(s)
Investigadores , Tecnología , Humanos
16.
Malar J ; 20(1): 395, 2021 Oct 09.
Artículo en Inglés | MEDLINE | ID: mdl-34627240

RESUMEN

BACKGROUND: Innovative tools are needed to complement the existing approach for malaria elimination. Gene drive mosquitoes are one potential new technology in the control of malaria vectors. Target Malaria is one of the research projects developing this technology, and in July 2019, the project proceeded to an important step for this evaluation pathway: the small-scale release of non-gene drive sterile male mosquitoes in a village in Burkina Faso. In addition to the entomological and laboratory work to prepare for this important milestone, significant community and stakeholder engagement work was done. The existing guidelines on gene drive mosquito provide an overall framework for such engagement work. However, they do not provide a road map on how to proceed or what benchmarks should be used to assess this work. METHODS: This study provides a review of engagement activities relevant to field trials on non-gene drive genetically-modified mosquitoes as well as an assessment framework-using both qualitative and quantitative studies as well as an audit procedure. The latter was implemented to evaluate whether the release activities could proceed with the appropriate level of agreement from the community. RESULTS: This paper shows the importance of this first phase of work to innovate and learn about engagement processes for responsible research in the field of genetic approaches for malaria vector control. The function of these assessments is crucial for the learning agenda. The assessments demonstrated ways to increase understanding and ensure effective progress with field studies and, therefore, the pathway for responsible research. CONCLUSION: Gene drive technology is increasingly considered as a promising approach to control vector borne diseases, in particular malaria. Stakeholders' involvement in this research process is one of the recurring requirements in international guidance documents. With this paper Target Malaria offers an opportunity to explore the practical achievements and challenges of stakeholder engagement during early phases of a technology evaluation, and in particular how it implemented an assessment framework to learn from its experience.


Asunto(s)
Tecnología de Genética Dirigida , Malaria/prevención & control , Control de Mosquitos/métodos , Animales , Burkina Faso , Comprensión , Tecnología de Genética Dirigida/métodos , Tecnología de Genética Dirigida/normas , Infertilidad Masculina , Conocimiento , Malaria/transmisión , Masculino , Auditoría Médica/métodos , Participación de los Interesados
17.
BMC Med Ethics ; 22(1): 48, 2021 04 26.
Artículo en Inglés | MEDLINE | ID: mdl-33902573

RESUMEN

BACKGROUND: CRISPR-Cas9, a technology enabling modification of the human genome, is developing rapidly. There have been calls for public debate to discuss its ethics, societal implications, and governance. So far, however, little is known about public attitudes on CRISPR-Cas9. This study contributes to a better understanding of public perspectives by exploring the various holistic perspectives Dutch citizens have on CRISPR-Cas9. METHODS: This study used Q methodology to identify different perspectives of Dutch citizens (N = 30) on the use of CRISPR-Cas9. The Q-sort method aims at segmenting audiences based on the structural characteristics of their perspectives. Participants individually ranked 32 statements about CRISPR-Cas9 and discussed their rankings in small groups. By-person factor analysis was performed using PQMethod. Participants' contributions to the discussions were used to further make sense of the audience segments identified. RESULTS: Five perspectives on CRISPR-Cas9 were identified: (1) pragmatic optimism (2) concerned scepticism; (3) normative optimism; (4) enthusiastic support; and (5) benevolent generalism. Each perspective represents a unique position motivated by different ranking rationales. Sorting rationales included improving health, preventing negative impacts on society, and fear of a slippery slope. Overall, there is broad, but not universal support for medical uses of CRISPR-Cas9. CONCLUSIONS: Research on CRISPR-Cas9 should prioritise the broadly supported applications of the technology. Research and public debates on CRISPR-Cas9, its uses, its broader implications, and the governance of CRISPR-Cas9 are recommended. A discourse that includes all perspectives can contribute to the embedding of future uses of CRISPR-Cas9 in society. This study shows that Q methodology followed by group discussions enables citizens to contribute meaningfully to discourses about research.


Asunto(s)
Investigación Biomédica/ética , Sistemas CRISPR-Cas , Repeticiones Palindrómicas Cortas Agrupadas y Regularmente Espaciadas/genética , Edición Génica/ética , Mejoramiento Genético/ética , Opinión Pública , Genoma Humano , Humanos , Países Bajos
18.
Sci Eng Ethics ; 27(2): 24, 2021 03 30.
Artículo en Inglés | MEDLINE | ID: mdl-33783667

RESUMEN

Organizational climate and culture may influence different work-related outcomes, including responsible conduct of research and research misconduct in academic or research organizations. In this scoping review we collected evidence on outcomes of interventions to change organizational climate or culture in academic or research settings. Out of 32,093 documents retrieved by the search, we analysed 207 documents in full text, out of which 7 met the eligibility criteria and were included in the final analysis. The included studies measured organizational climate (2 studies), organizational culture (4 studies), or both (1 study) at biomedical faculties (4 studies) or non-academic university departments (3 studies). Four studies had post-test, and three before-and-after study designs. The majority of interventions were face-to-face activities (meetings, different teambuilding activities), and two were based on organizational change. Six studies reported positive changes in organizational climate/culture after the intervention. These positive changes were measured as improvements in score on different questionnaire survey or were described through authors' or external evaluator's narrative reports. However, the methodological quality of the studies was low, both for qualitative and quantitative study designs. Replicable studies, using rigorous methods and clearly defined outcomes are urgently needed if organizations want to achieve a real change in organizational climate or culture for responsible research. The protocol for this scoping review was registered at https://osf.io/7zjqb .


Asunto(s)
Organizaciones , Mala Conducta Científica , Docentes , Humanos , Cultura Organizacional , Universidades
19.
Sci Eng Ethics ; 27(1): 13, 2021 02 18.
Artículo en Inglés | MEDLINE | ID: mdl-33599880

RESUMEN

Current European innovation and security policies are increasingly channeled into efforts to address the assumed challenges that threaten European societies. A field in which this has become particularly salient is digitized EU border management. Here, the framework of responsible research and innovation (RRI) has recently been used to point to the alleged sensitivity of political actors towards the contingent dimensions of emerging security technologies. RRI, in general, is concerned with societal needs and the engagement and inclusion of various stakeholder groups in the research and innovation processes, aiming to anticipate undesired consequences of and identifying socially acceptable alternatives for emerging technologies. However, RRI has also been criticized as an industry-driven attempt to gain societal legitimacy for new technologies. In this article, we argue that while RRI evokes a space where different actors enter co-creative dialogues, it lays bare the specific challenges of governing security innovation in socially responsible ways. Empirically, we draw on the case study of BODEGA, the first EU funded research project to apply the RRI framework to the field of border security. We show how stakeholders involved in the project represent their work in relation to RRI and the resulting benefits and challenges they face. The paper argues that applying the framework to the field of (border) security lays bare its limitations, namely that RRI itself embodies a political agenda, conceals alternative experiences by those on whom security is enacted upon and that its key propositions of openness and transparency are hardly met in practice due to confidentiality agreements. Our hope is to contribute to work on RRI and emerging debates about how the concept can (or cannot) be contextualized for the field of security-a field that might be more in need than any other to consider the ethical dimension of its activities.


Asunto(s)
Ética en Investigación , Humanos
20.
Sci Eng Ethics ; 27(1): 11, 2021 02 10.
Artículo en Inglés | MEDLINE | ID: mdl-33566200

RESUMEN

In this contribution, we set out a framework for ethical research and innovation. Our framework draws upon recent scholarly work recommending the introduction of new models at the intersection of ethics, strategy, and science and technology studies to inform and explicate how the decisions of researchers can be considered ethical. Ethical research and innovation is construed in our framework as a dynamic process emerging from decisions of multiple stakeholders in innovation ecosystems prior to, during and after the execution of a research and innovation project. The framework can be used by different types of research organizations to implement governance models of ethical research and innovation.


Asunto(s)
Ecosistema , Ética en Investigación , Humanos , Investigadores , Tecnología
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