scholarly journals Citizen Science and Biomedical Research: Implications for Bioethics Theory and Practice

Author(s):  
Chris W Callaghan

Certain trends in scientific research have important relevance to bioethics theory and practice. A growing stream of literature relates to increasing transparency and inclusivity of populations (stakeholders) in scientific research, from high volume data collection, synthesis, and analysis to verification and ethical scrutiny. The emergence of this stream of literature has implications for bioethics theory and practice. This paper seeks to make explicit these streams of literature and to relate these to bioethical issues, through consideration of certain extreme examples of scientific research where bioethical engagement is vital. Implications for theory and practice are derived, offering useful insights derived from multidisciplinary theory. Arguably, rapidly developing fields of citizen science such as informing science and others seeking to maximise stakeholder involvement in both research and bioethical engagement have emerged as a response to these types of issues; radically enhanced stakeholder engagement in science may herald a new maximally inclusive and transparent paradigm in bioethics based on lessons gained from exposure to increasingly uncertain ethical contexts of biomedical research.

Cancers ◽  
2020 ◽  
Vol 13 (1) ◽  
pp. 86
Author(s):  
Mohit Kumar ◽  
Chellappagounder Thangavel ◽  
Richard C. Becker ◽  
Sakthivel Sadayappan

Immunotherapy is one of the most effective therapeutic options for cancer patients. Five specific classes of immunotherapies, which includes cell-based chimeric antigenic receptor T-cells, checkpoint inhibitors, cancer vaccines, antibody-based targeted therapies, and oncolytic viruses. Immunotherapies can improve survival rates among cancer patients. At the same time, however, they can cause inflammation and promote adverse cardiac immune modulation and cardiac failure among some cancer patients as late as five to ten years following immunotherapy. In this review, we discuss cardiotoxicity associated with immunotherapy. We also propose using human-induced pluripotent stem cell-derived cardiomyocytes/ cardiac-stromal progenitor cells and cardiac organoid cultures as innovative experimental model systems to (1) mimic clinical treatment, resulting in reproducible data, and (2) promote the identification of immunotherapy-induced biomarkers of both early and late cardiotoxicity. Finally, we introduce the integration of omics-derived high-volume data and cardiac biology as a pathway toward the discovery of new and efficient non-toxic immunotherapy.


2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
H Vilaça

Abstract The Regulation responds to legislation failures in the European regulatory framework on medical devices (MD), which in turn led to public health issues. Two media scandals triggered the final actions on the elaboration of this EU Regulation, which was already being thought off in a context of fast MD development, and on the commitment of member-states to harmonize legislation in order to better manage resources. This Regulation is expected to address detected gaps, and contribute to the protection of European citizens' health by ensuring high quality and safety of MD, through advocating for more transparency, vigilance, and traceability. A technique to evaluate policies is the implementation analysis, as it links theory and practice. By understanding it, it is possible to ascertain if, in fact, the Regulation will contribute, as proposed, to improve public health. The implementation analysis framework I developed can be used in other countries affected by this Regulation, and may even be extrapolated to other scenarios. Entry into force 25/05/17.Full application 05/20. This qualitative study uses document analysis and semi-structured interviews to collect data, and literature review to frame the situation and to study implementation analysis. The questions are: identify the facilitators and resistance points of the implementation; explore perceptions of the Portuguese MD distributors; understand the policy implementation pathway; and have a picture of the implementation status in Portugal. The results can be summarized as: implementers are interested in complying with the Regulation; there is stakeholder involvement in policy making and throughout the implementation process; the main points of resistance, difficulties and the facilitators are identified; and the Regulation is being implemented according to the timelines. The public health action brought by the policy is that each economic operator is an active actor on vigilance and patient safety across MD lifecycle. Key messages If we are interested in the extent to which a particular polity is able to solve the problems with which it is confronted, we need to study the way in which the law is executed in practice. Focus on the effective implementation of the new regulatory framework on medical devices to protect patients and ensure it addresses new and emerging challenges.


2021 ◽  
Vol 14 (2) ◽  
pp. 115-144
Author(s):  
Colin Milburn ◽  
Melissa Wills

Over the last decade, a variety of ‘citizen science’ projects have turned to video games and other tools of gamification to enrol participants and to encourage public engagement with scientific research questions. This article examines the significance of sf in the field of citizen science, focusing on projects such as Eyewire, Be a Martian!, Sea Hero Quest, Play to Cure: Genes in Space, Forgotten Island and the ‘Project Discovery’ experiments in EVE Online. The sf stories that frame these projects often allegorise the neoliberal assumptions and immaterial labour practices of citizen science, even while seeming to hide or disguise them. At the same time, the fictional frames enable players to imagine social and technical innovations that, while not necessarily achievable in the present, nevertheless point to a future of democratic science, social progress and responsible innovation - blips of utopian thought from the zones of crowdsourced labour.


2015 ◽  
Vol 162 (4) ◽  
pp. 365-373 ◽  
Author(s):  
Fabrizio Buldrini ◽  
Antinisca Simoncelli ◽  
Stefania Accordi ◽  
Giovanna Pezzi ◽  
Daniele Dallai

F1000Research ◽  
2018 ◽  
Vol 7 ◽  
pp. 511 ◽  
Author(s):  
Laura McDonald ◽  
Faisal Mehmud ◽  
Sreeram V. Ramagopalan

Recent studies have used mainstream consumer devices (Fitbit) to assess sleep objectively and test the well documented association between sleep and body mass index (BMI). In order to further investigate the applicability of Fitbit data for biomedical research across the globe, we analysed openly available Fitbit data from a largely Chinese population. We found that after adjusting for age, gender, race, and average number of steps taken per day, average hours of sleep per day was negatively associated with BMI (p=0.02), further demonstrating the significant potential for wearables in international scientific research.


2019 ◽  
Vol 10 (2) ◽  
Author(s):  
Adrielly Haiany Coimbra Feitosa ◽  
Tamires Barradas Cavalcante ◽  
Kezia Cristina Batista Dos Santos ◽  
Gabriela Sellen Campos Ribeiro

Objetivo: identificar o perfil e a produção científica dos bolsistas de produtividade em pesquisa do Conselho Nacional de Pesquisa (CNPq) da área da Residência Multiprofissional em Saúde (RMS) no triênio 2013-2015. Metodologia: estudo descritivo e quantitativo. A pesquisa foi realizada no mês de setembro de 2017, utilizou-se formulário estruturado para coleta de dados a partir do currículo Lattes. Resultados: foram identificados 23 bolsistas, 91,5% do sexo feminino, 78,2% da categoria 2 e 43,5% da área da Enfermagem. Dentre o total de periódicos publicados 8 foram sobre a RMS com predominância de Qualis B1 e B4. Quanto às orientações sobre a RMS 23 foram realizadas no último triênio. Conclusão: é necessário estimular pesquisas sobre à RMS objetivando o conhecimento e valorização dessa modalidade educativa, bem como estimular a sua importância nos serviços de saúde. Estudos dessa natureza são necessários para nortear novas pesquisas.Descritores: Academias e Institutos; Internato não Médico; Pesquisa Científica e Desenvolvimento Tecnológico.PROFILE OF THE PRODUCTIVITY SCOLARSHIPS OF THE MULTIPROFESSIONAL HEALTH RESIDENCY PROGRAM IN THE TRIENNIUM 2013-2015Objective: to identify the profile and scientific production of research productivity fellows from the Brazilian National Research Council (CNPq) of the Multiprofessional Health Residence (RMS) in the triennium 2013-2015. Methodology: descriptive and quantitative study. The research was conducted in September 2017, using a structured form for data collection from the Lattes curriculum. Results: 23 scholarship recipients were identified, 91.5% female, 78.2% from category 2 and 43.5% from the Nursing area. Among the total of published journals, 8 were on RMS with a predominance of Qualis B1 and B4. About the orientations about RMS, 23 were conducted in the last three years. Conclusion: it is necessary to stimulate research on RMS aiming at the knowledge and valuation of this educational modality, as well as stimulating its importance in health services. Studies of this nature are needed to guide new research.Descriptors: Academies and Institutes; Internship not Medical; Scientific Research and Technological DevelopmentPERFIL DE LOS BOLSISTAS DE PRODUCTIVIDAD DEL PROGRAMA DE RESIDENCIA MULTIPROFESIONAL EN SALUD EN EL TRIENIO 2013-2015Objetivo: identificar el perfil y la producción científica de los becarios de productividad en investigación del Consejo Nacional de Investigación (CNPq) del área de la Residencia Multiprofesional en Salud (RMS) en el trienio 2013-2015. Metodología: estudio descriptivo y cuantitativo. La encuesta fue realizada en el mes de septiembre de 2017, se utilizó formulario estructurado para recolección de datos a partir del currículo Lattes. Resultados: se identificaron 23 becarios, 91,5% del sexo femenino, 78,2% de la categoría 2 y 43,5% del área de la Enfermería. De entre el total de periódicos publicados 8 fueron sobre la RMS con predominancia de Qualis B1 y B4. En cuanto a las orientaciones sobre la RMS 23 se realizaron en el último trienio. Conclusión: es necesario estimular investigaciones sobre la RMS objetivando el conocimiento y valorización de esa modalidad educativa, así como estimular su importancia en los servicios de salud. Los estudios de esta naturaleza son necesarios para orientar nuevas investigaciones.Descriptores: Academias e Institutos; Internado no Médico; Investigación Científica y Desarrollo Tecnológico.


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