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4.
PLoS One ; 15(9): e0239283, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32946521

RESUMEN

Both sharing and using open research data have the revolutionary potentials for forwarding scientific advancement. Although previous research gives insight into researchers' drivers and inhibitors for sharing and using open research data, both these drivers and inhibitors have not yet been integrated via a thematic analysis and a theoretical argument is lacking. This study's purpose is to systematically review the literature on individual researchers' drivers and inhibitors for sharing and using open research data. This study systematically analyzed 32 open data studies (published between 2004 and 2019 inclusively) and elicited drivers plus inhibitors for both open research data sharing and use in eleven categories total that are: 'the researcher's background', 'requirements and formal obligations', 'personal drivers and intrinsic motivations', 'facilitating conditions', 'trust', 'expected performance', 'social influence and affiliation', 'effort', 'the researcher's experience and skills', 'legislation and regulation', and 'data characteristics.' This study extensively discusses these categories, along with argues how such categories and factors are connected using a thematic analysis. Also, this study discusses several opportunities for altogether applying, extending, using, and testing theories in open research data studies. With such discussions, an overview of identified categories and factors can be further applied to examine both researchers' drivers and inhibitors in different research disciplines, such as those with low rates of data sharing and use versus disciplines with high rates of data sharing plus use. What's more, this study serves as a first vital step towards developing effective incentives for both open data sharing and use behavior.


Asunto(s)
Investigación Biomédica/ética , Ética en Investigación , Investigadores/ética , Adulto , Femenino , Humanos , Difusión de la Información/ética , Masculino , Persona de Mediana Edad , Publicaciones/ética , Confianza
6.
PLoS One ; 15(8): e0235618, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32756563

RESUMEN

BACKGROUND: This is a multi-method, in-depth, three part qualitative study exploring the regulation and practice of secondary research with tissue and data in a high-income country. We explore and compare the perspectives of researchers, research ethics committees (RECs) and other relevant professionals (e.g. pathologists and clinicians). We focus on points of contention because they demonstrate misalignment between the expectations, values and assumptions of these stakeholders. METHODS: This is a multi-method study using observational research, focus groups and interviews with 42 participants (conducted 2016-2017) and analyzed using thematic analysis. RESULTS: Results are arranged under the following themes: consent; balancing the social value of the research with consent requirements; and harm. Our findings demonstrate different perspectives on the review process, styles of ethical reasoning and issues of concern. First, researchers and RECs disagreed about whether the cost of re-consenting patients satisfied the criterion of impracticability for consent waivers. Second, most researchers were skeptical that secondary research with already collected tissue and data could harm patients. Researchers often pointed to the harm arising from a failure to use existing material for research. RECs were concerned about the potential for secondary research to stigmatize communities. Third, researchers adopted a more consequentialist approach to decision-making, including some willingness to trade off the benefit of the research against the cost of getting consent; whereas RECs were more deontological and typically considered research benefit only after it had been established that re-consent was impractical. CONCLUSION: This research highlights ways in which RECs and researchers may be talking past each other, resulting in confusion and frustration. These finding provide a platform for realignment of the expectations of RECs and researchers, which could contribute to making research ethics review more effective.


Asunto(s)
Comités de Ética en Investigación , Consentimiento Informado/ética , Comités de Ética en Investigación/ética , Ética en Investigación , Grupos Focales , Humanos , Investigación Cualitativa , Proyectos de Investigación , Investigadores/ética , Bancos de Tejidos/ética
7.
Niger Postgrad Med J ; 27(3): 250-258, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32687128

RESUMEN

Research misconduct policy (RMP) is a legal document that shows the definitions of the various types of misconduct, describes the inquiry and investigation of allegations, and the appropriate penalties that should be imposed. The presence of the adopted RMP on the website of a university or postgraduate college is an indication of the level of commitment to promote the proper handling of misconduct cases. Perusal of the websites of top universities in developing countries revealed that many do not have RMP on their websites. The probable starting point for combating research misconduct at the national or institutional level is by acquisition of RMP. The purpose of this article is to propose a modern, structured and cost-effective RMP for universities and postgraduate colleges in developing countries. The bibliographic database, PubMed, was searched using the terms 'research misconduct' and 'research misconduct policy'. All relevant articles from the search and some RMPs of universities, national agencies and global health organisations available on the Internet were carefully studied. A formulated RMP, based on the Final Rule of the United States, Public Health Services Policies on Research Misconduct of 2005 and the Regulations of the University Grants Commission of India of 2018, is hereby presented. In the proposed RMP, plagiarism was stratified into four levels in ascending order of severity so that imposed penalties are commensurate with the seriousness of misconduct. The zero tolerance for plagiarism in the core work areas was adopted. The proposed RMP was designed to act as a template. It should be modified as required based on the prevailing local circumstances and made fit for purpose. Universities, postgraduate colleges and journals should have RMP on the homepage of their websites.


Asunto(s)
Autoria/normas , Investigación Biomédica/ética , Plagio , Edición/ética , Investigadores/ética , Mala Conducta Científica/ética , Academias e Institutos , Países en Desarrollo , Ética en Investigación , Humanos , Revisión por Pares/normas , Edición/normas , Universidades
11.
Ethics Hum Res ; 42(2): 34-40, 2020 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-32233115

RESUMEN

The use of deception is typically prohibited in studies that pose greater than minimal risk overall. This approach prevents researchers from using deception to conceal significant risks or to deceive participants about the purpose, potential benefits, or other aspects of a study that are relevant to deciding whether to accept such risks. Yet this approach also mistakenly blocks appropriate research. In particular, it keeps researchers from using deception in studies that pose greater than minimal risk, even when participants are informed accurately about the risks and other aspects of the study that are relevant to deciding whether to participate. Rather than prohibiting deception when the overall study poses greater than minimal risk, policies should prohibit deception when the aspect of the study about which participants are deceived poses greater than minimal risk.


Asunto(s)
Decepción , Ética , Experimentación Humana/ética , Investigadores/ética , Sujetos de Investigación , Medición de Riesgo/normas , Humanos , Consentimiento Informado
14.
PLoS Biol ; 18(2): e3000576, 2020 02.
Artículo en Inglés | MEDLINE | ID: mdl-32045410

RESUMEN

The reproducibility crisis triggered worldwide initiatives to improve rigor, reproducibility, and transparency in biomedical research. There are many examples of scientists, journals, and funding agencies adopting responsible research practices. The QUEST (Quality-Ethics-Open Science-Translation) Center offers a unique opportunity to examine the role of institutions. The Berlin Institute of Health founded QUEST to increase the likelihood that research conducted at this large academic medical center would be trustworthy, useful for scientists and society, and ethical. QUEST researchers perform "science of science" studies to understand problems with standard practices and develop targeted solutions. The staff work with institutional leadership and local scientists to incentivize and support responsible practices in research, funding, and hiring. Some activities described in this paper focus on the institution, whereas others may benefit the national and international scientific community. Our experience, approaches, and recommendations will be informative for faculty leadership, administrators, and researchers interested in improving scientific practice.


Asunto(s)
Centros Médicos Académicos/normas , Investigación Biomédica/normas , Centros Médicos Académicos/economía , Centros Médicos Académicos/organización & administración , Investigación Biomédica/ética , Alemania , Humanos , Difusión de la Información , Guías de Práctica Clínica como Asunto , Evaluación de Programas y Proyectos de Salud , Reproducibilidad de los Resultados , Investigadores/ética , Investigadores/normas , Investigación en Medicina Traslacional/ética , Investigación en Medicina Traslacional/normas
15.
Cien Saude Colet ; 25(2): 421-428, 2020 Feb.
Artículo en Portugués | MEDLINE | ID: mdl-32022183

RESUMEN

This article seeks to highlight the construction of social navigation in a hospital. Our focus is to reflect on scenes of application of a questionnaire on family costs of care/treatment of children with rare diseases. These processes are linked to the markers of gender, race, and generation of one of the authors. The interaction between researcher and subjects of field research is socially constructed according to the specific circumstances that demarcate the invitation to participate in the research, as well as data collection. It implies that his position as a researcher and the ethical perspective need to be well defined. The approach and ethics build this social navigation with the hospital and the subjects are permeated by difficulty and uncertainty, but also by surprises and learning. It was possible to observe remarkable characteristics of the institution, of their employees and the families, to evaluate the used methodological strategies.


Asunto(s)
Familia , Relaciones Profesional-Familia , Enfermedades Raras/terapia , Investigadores/organización & administración , Adolescente , Niño , Recolección de Datos/métodos , Costos de la Atención en Salud , Hospitalización/economía , Humanos , Enfermedades Raras/economía , Investigadores/ética , Encuestas y Cuestionarios
16.
BMC Med Ethics ; 21(1): 11, 2020 01 31.
Artículo en Inglés | MEDLINE | ID: mdl-32005225

RESUMEN

BACKGROUND: Genomic research can reveal 'unsolicited' or 'incidental' findings that are of potential health or reproductive significance to participants. It is widely thought that researchers have a moral obligation, grounded in the duty of easy rescue, to return certain kinds of unsolicited findings to research participants. It is less widely thought that researchers have a moral obligation to actively look for health-related findings (for example, by conducting additional analyses to search for findings outside the scope of the research question). MAIN TEXT: This paper examines whether there is a moral obligation, grounded in the duty of easy rescue, to actively hunt for genomic secondary findings. We begin by showing how the duty to disclose individual research findings can be grounded in the duty of easy rescue. Next, we describe a parallel moral duty, also grounded in the duty of easy rescue, to actively hunt for such information. We then consider six possible objections to our argument, each of which we find unsuccessful. Some of these objections provide reason to limit the scope of the duty to look for secondary findings, but none provide reason to reject this duty outright. CONCLUSIONS: We argue that under a certain range of circumstances, researchers are morally required to hunt for these kinds of secondary findings. Although these circumstances may not currently obtain, genomic researchers will likely acquire an obligation to hunt for secondary findings as the field of genomics continues to evolve.


Asunto(s)
Revelación/ética , Investigación Genética/ética , Obligaciones Morales , Investigadores/ética , Conflicto Psicológico , Ética en Investigación , Genoma Humano , Humanos , Hallazgos Incidentales , Relaciones Investigador-Sujeto/ética , Responsabilidad Social
17.
Niger J Clin Pract ; 23(2): 129-137, 2020 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-32031085

RESUMEN

Background: Health research is an essential component of medical training, education, and practice and is fundamental in establishing the scientific basis of health care. Aim: The study was aimed at describing the attitude, practice, benefits, and barriers towards health research and publications in a cross-section of medical practitioners in Abia State, Nigeria. Materials and Methods: This was a cross-sectional descriptive study carried out on 210 medical practitioners in Abia State. Data collection was done using pretested, self-administered questionnaire that elicited information on attitude, practice, benefits, and barriers toward health research. Awareness of research misconduct, types of published research articles, and factors considered in selection of journals for publication of research were also studied. Results: The age of the participants ranged from 26 to 77 years. There were 173 (82.4%) men. The overall attitude toward research was moderate (x = 5.02 ± 0.96). All the respondents (100%) were involved in undergraduate research projects while 72 (34.3%) had at least one journal publication with the most commonly published articles being descriptive studies. The commonest barriers to research were financial and time constraints while the greatest benefits of research were advancement of medical knowledge and keeping practitioners abreast with evidence-based medicine. The commonest research misconduct was plagiarism while the most common factor considered in selection of journals for publication was article publication charges. Middle age group and years of practice more than 10 years were significantly associated with publication of journal articles (P < 0.05). Conclusion: This study has shown that the study participants had moderate positive attitude toward research with all the participants previously involved in undergraduate research and only one third had at least one journal publications. The commonest barriers were financial and time constraints and greatest benefits of health research was advancement of medical knowledge and keeping practitioners abreast with evidence-based medicine. Choice of journal for publications is preeminently determined by article publication charges. The most common article published and research misconduct was descriptive studies and plagiarism, respectively.


Asunto(s)
Investigación Biomédica , Conocimientos, Actitudes y Práctica en Salud , Personal de Salud/psicología , Investigadores/psicología , Estudiantes de Medicina/psicología , Adulto , Investigación Biomédica/ética , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Nigeria , Publicaciones Periódicas como Asunto , Plagio , Publicaciones , Investigadores/ética , Apoyo a la Investigación como Asunto , Mala Conducta Científica , Encuestas y Cuestionarios
18.
Ciênc. Saúde Colet ; 25(2): 421-428, Feb. 2020.
Artículo en Portugués | LILACS | ID: biblio-1055809

RESUMEN

Resumo No presente artigo, procura-se evidenciar a construção da navegação social em um hospital. O enfoque dado privilegiou os bastidores da aplicação de um questionário quantitativo sobre os custos da família com os cuidados/tratamento de seu(sua) filho(a) com doença rara. Permeando a descrição desses processos estão os marcadores de gênero, raça e geração de um dos autores deste artigo. A interação entre pesquisador e sujeitos da pesquisa em campo é socialmente construída, conforme as circunstâncias específicas que demarcam o convite para participar da pesquisa, bem como a coleta de dados, por isso o lugar que ocupa e a postura ética precisam estar bem definidos e claros para o pesquisador. O exercício metodológico e ético de construção desta navegação social com a instituição hospitalar e os sujeitos pesquisados foi permeada por dificuldade e incertezas, mas também por surpresas e aprendizados. Foi possível observar características marcantes da instituição, de seus funcionários e das famílias entrevistadas e, avaliar as estratégias metodológicas utilizadas.


Abstract This article seeks to highlight the construction of social navigation in a hospital. Our focus is to reflect on scenes of application of a questionnaire on family costs of care/treatment of children with rare diseases. These processes are linked to the markers of gender, race, and generation of one of the authors. The interaction between researcher and subjects of field research is socially constructed according to the specific circumstances that demarcate the invitation to participate in the research, as well as data collection. It implies that his position as a researcher and the ethical perspective need to be well defined. The approach and ethics build this social navigation with the hospital and the subjects are permeated by difficulty and uncertainty, but also by surprises and learning. It was possible to observe remarkable characteristics of the institution, of their employees and the families, to evaluate the used methodological strategies.


Asunto(s)
Humanos , Niño , Adolescente , Relaciones Profesional-Familia , Investigadores/organización & administración , Familia , Enfermedades Raras/terapia , Investigadores/ética , Recolección de Datos/métodos , Encuestas y Cuestionarios , Costos de la Atención en Salud , Enfermedades Raras/economía , Hospitalización/economía
19.
BMC Med Ethics ; 21(1): 7, 2020 01 16.
Artículo en Inglés | MEDLINE | ID: mdl-31948449

RESUMEN

BACKGROUND: As Next Generation Sequencing technologies are increasingly implemented in biomedical research and (translational) care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients have a legal and moral right to receive their genomic raw data and, if so, how this right should be implemented into practice. METHODS: In a first step we clarify some central concepts such as "raw data"; in a second step we sketch the international legal framework. The third step provides an extensive ethical analysis which comprehends two parts: an evaluation of whether there is a prima facie moral right to receive one's raw data, and a contextualization and discussion of the right in light of potentially conflicting interests and rights of the data subject herself and third parties; in a last fourth step we emphasize the main practical consequences of the ethical analyses and propose recommendations for the release of raw data. RESULTS: In several legislations like the new European General Data Protection Regulation, patients do in principle have the right to receive their raw data. However, the procedural implementation of this right and whether it involves genetic counselling is at the discretion of the Member States. Even more questions remain with respect to the research context. The ethical analysis suggests that patients and research subjects have a moral right to receive their genomic raw data and addresses aspects which are also of relevance for the legal discussion such as the costs of release of raw data and its impact on academic freedom. CONCLUSION: Taking into account the specific nature and implications of genomic raw data and the contexts of research and health care, several concerns and potentially conflicting interests of the data subjects themselves and involved researchers, physicians, biomedical institutions and relatives arise. Instead of using them to argue in favor of restrictions of the data subjects' legal and moral right to genomic raw data, the concerns should be addressed through provision of information and other measures. To this end, we propose relevant recommendations.


Asunto(s)
Privacidad Genética/ética , Privacidad Genética/legislación & jurisprudencia , Investigación Genética/ética , Investigación Genética/legislación & jurisprudencia , Genómica/ética , Pacientes , Sujetos de Investigación , Confidencialidad/ética , Confidencialidad/legislación & jurisprudencia , Análisis Ético , Europa (Continente) , Humanos , Consentimiento Informado/ética , Consentimiento Informado/legislación & jurisprudencia , Investigadores/ética
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