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1.
J Empir Res Hum Res Ethics ; 15(1-2): 97-107, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31631742

RESUMO

There has been a recent increase in debates on the ethics of social media research, passive sensor data collection, and big data analytics. However, little evidence exists to describe how people experience and understand these applications of technology. This study aimed to passively collect data from mobile phone sensors, lapel cameras, and Bluetooth beacons to assess people's understanding and acceptance of these technologies. Seven households were purposefully sampled and data collected for 10 days. The study generated 48 hr of audio data and 30,000 images. After participant review, the data were destroyed and in-depth interviews conducted. Participants found the data collected acceptable and reported willingness to participate in similar studies. Key risks included that the camera could capture nudity and sex acts, but family review of footage before sharing helped reduce concerns. The Emanuel et al. ethics framework was found to accommodate the concerns and perspectives of study participants.


Assuntos
Atitude , Confidencialidade , Coleta de Dados/ética , Consentimento Livre e Esclarecido , Privacidade , Projetos de Pesquisa , Tecnologia/ética , Adulto , Telefone Celular , Pré-Escolar , Compreensão , Coleta de Dados/métodos , Ética em Pesquisa , Características da Família , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Relações Mãe-Filho , População Rural , Mídias Sociais , África do Sul , Gravação de Videoteipe/ética , Dispositivos Eletrônicos Vestíveis , Adulto Jovem
2.
Dev World Bioeth ; 18(4): 341-348, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-28470868

RESUMO

Health research initiatives worldwide are growing in scope and complexity, particularly as they move into the developing world. Expanding health research activity in low- and middle-income countries has resulted in a commensurate rise in the need for sound ethical review structures and functions in the form of Research Ethics Committees (RECs). The urgent need for continued capacity development in Africa has necessitated research initiatives to identify existing capacity. This discussion paper describes the mapping of RECs in Africa through MARC (Mapping African Research Ethics Capacity) project, second phase (2012 to date) and discusses the findings. MARC provides a platform and tool on COHRED's Health Research HRWeb, which can be used by RECs and key stakeholders in health research in Africa to identify capacity, constraints and development needs.


Assuntos
Fortalecimento Institucional , Países em Desenvolvimento , Revisão Ética , Comitês de Ética em Pesquisa , Ética em Pesquisa , África , Humanos , Pesquisa
3.
J Empir Res Hum Res Ethics ; 11(4): 322-333, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-27830644

RESUMO

There has not been enough study of the processes by which site staff help participating community members and potential participants to understand complicated concepts for HIV vaccine trials. This article describes strategies reported in six focus group discussions with Community Advisory Board members, educators, and consent counselors at an active HIV vaccine trial site in South Africa. Thematic analysis identified a considerable range of strategies, and findings suggest that such staff do not only try to promote understanding of critical information but also try to build trust in communicated information, to respect cultural differences, and to promote voluntariness. Findings also suggest occasional tensions between these implicit goals. Actual engagement and consent encounters at HIV vaccine trial sites should be observed, recorded, and analyzed; and the relationship between practices and valued outcomes should be assessed. These efforts may help to make consent-related encounters as "potent" as possible given finite resources.


Assuntos
Vacinas contra a AIDS , Pesquisa Biomédica/ética , Pesquisa Participativa Baseada na Comunidade , Relações Comunidade-Instituição , Infecções por HIV , Consentimento Livre e Esclarecido , Características de Residência , Comitês Consultivos , Comunicação , Compreensão , Cultura , Ética em Pesquisa , Grupos Focais , Humanos , Pesquisadores , Sujeitos da Pesquisa , África do Sul , Confiança , Voluntários
4.
Dev World Bioeth ; 16(3): 133-139, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-26871547

RESUMO

The growing importance of health systems research has opened debate about appropriate ethical frameworks and guidelines for the ethical review and conduct of health systems research. In this article we consider a detailed proposal from Hyder et al. (2014) and consider it in relation to the conventional criteria for ethics review of clinical research outlined by Emanuel et al. (2004; 2008) and argue that the Emanuel criteria can be usefully applied to the review of health systems research to supplement the Hyder et al. proposals. We argue further that health systems researchers and reviewers would benefit from many of the debates that have characterized the ethics of clinical research over the past three decades.


Assuntos
Pesquisa Biomédica , Países em Desenvolvimento , Ética em Pesquisa , Pesquisa sobre Serviços de Saúde/ética , Revisão Ética , Comitês de Ética em Pesquisa , Humanos
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