14 found
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  1.  40
    Ethics review of big data research: What should stay and what should be reformed?Effy Vayena, Minerva Rivas Velarde, Mahsa Shabani, Gabrielle Samuel, Camille Nebeker, S. Matthew Liao, Peter Kleist, Walter Karlen, Jeff Kahn, Phoebe Friesen, Bobbie Farsides, Edward S. Dove, Alessandro Blasimme, Mark Sheehan, Marcello Ienca & Agata Ferretti - 2021 - BMC Medical Ethics 22 (1):1-13.
    BackgroundEthics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts.Main textIn this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map (...)
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  2.  13
    From “Informed” to “Engaged” Consent: Risks and Obligations in Consent for Participation in a Health Data Repository.Elizabeth Bromley, Alexandra Mendoza-Graf, Sandra Berry, Camille Nebeker & Dmitry Khodyakov - 2020 - Journal of Law, Medicine and Ethics 48 (1):172-182.
    The development and use of large and dynamic health data repositories designed to support research pose challenges to traditional informed consent models. We used semi-structured interviewing to elicit diverse research stakeholders' views of a model of consent appropriate to participation in initiatives that entail collection, long-term storage, and undetermined future research use of multiple types of health data. We demonstrate that, when considering health data repositories, research stakeholders replace a concept of consent as informed with one in which consent is (...)
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  3.  11
    Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives.Camille Nebeker, John Harlow, Rebeca Giacinto-Espinoza, Rubi Orozco-Linares, Cinnamon S. Bloss & Nadir Weibel - forthcoming - AJOB Empirical Bioethics:00-00.
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  4.  13
    Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives.Camille Nebeker, John Harlow, Rebeca Espinoza Giacinto, Rubi Orozco-Linares, Cinnamon S. Bloss & Nadir Weibel - 2017 - AJOB Empirical Bioethics 8 (4):266-276.
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  5.  11
    Return of Value in the New Era of Biomedical Research—One Size Will Not Fit All.Dmitry Khodyakov, Alexandra Mendoza-Graf, Sandra Berry, Camille Nebeker & Elizabeth Bromley - forthcoming - AJOB Empirical Bioethics:1-11.
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  6.  8
    Using Participatory Design to Inform the Connected and Open Research Ethics Commons.John Harlow, Nadir Weibel, Rasheed Al Kotob, Vincent Chan, Cinnamon Bloss, Rubi Linares-Orozco, Michelle Takemoto & Camille Nebeker - 2020 - Science and Engineering Ethics 26 (1):183-203.
    Mobile health research involving pervasive sensors, mobile apps and other novel data collection tools and methods present new ethical, legal, and social challenges specific to informed consent, data management and bystander rights. To address these challenges, a participatory design approach was deployed whereby stakeholders contributed to the development of a web-based commons to support the mHealth research community including researchers and ethics board members. The CORE platform now features a community forum, a resource library and a network of nearly 600 (...)
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  7.  13
    Training in Research Ethics and Standards for Community Health Workers and Promotores Engaged in Latino Health Research.Camille Nebeker, Michael Kalichman, Ana Talavera & John Elder - 2015 - Hastings Center Report 45 (4):20-27.
    A model frequently used to implement community‐based research involves engaging local community health workers who are trusted members of the community and familiar with local customs, language, and culture. In Spanish‐speaking communities, the CHWs are also known as promotores de salud (“health promoters”). Depending on the study design and nature of the research, promotores facilitate research through community outreach, instrument design, participant recruitment, intervention delivery, data collection, and other research‐related tasks. In 2000, the National Institutes of Health published a regulation (...)
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  8.  3
    Navigating the Ethical Maze in Digital Health Research.Camille Nebeker - 2024 - American Journal of Bioethics 24 (2):99-102.
    Shen et al. (2024) have articulated the many opportunities as well as notable challenges associated with the emerging practice of returning individual research results (IRR) specific to digital phe...
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  9.  14
    Optimizing Ethics Engagement in Research: Learning from the Ethical Complexities of Studying Opioid Use in Pregnancy.Seema K. Shah, Marielle Gross & Camille Nebeker - 2022 - Journal of Law, Medicine and Ethics 50 (2):339-347.
    Research on opioid use in pregnancy is critically important to understand how the opioid epidemic has affected a generation of children, but also raises significant ethical and legal challenges. Embedded ethicists can help to fill the gaps in ethics oversight for such research, but further guidance is needed to help strike the balance between integration and independence.
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  10.  4
    Perceptions of Pharmacy Graduate Students Toward Research Ethics Education: A Cross-Sectional Study from a Developing Country.Wesam S. Ahmed, Amgad Ahmed, Karem H. Alzoubi & Camille Nebeker - 2022 - Science and Engineering Ethics 28 (6):1-18.
    Despite the potential value of graduate-level research ethics training, most Middle East countries, including Jordan, do not routinely offer formal research ethics training. In students enrolled in Jordanian master’s level graduate program in pharmacy, the current study assessed: 1- differences in pre- and post-enrollment exposure to research ethics core themes, 2- whether this exposure was through a formal course or in an informal setting, and 3- student attitudes towards research ethics education and the need for integrating a dedicated research ethics (...)
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  11.  6
    A Proposal for Thinking Strategically About Ethics Education.Camille Nebeker - 2014 - Journal of Philosophy, Science and Law 14:32-46.
    Training in the responsible conduct of research (RCR) is mandated for select trainees supported by federal funds. RCR Instructors typically address standards and accepted practices for the planning, conduct and reporting of academic research. While this focus may be relevant to future academic scientists, the majority of science graduate students pursue careers in non-academic employment sectors (e.g., government, non-profit, industry). The ethical and regulatory conventions, norms and expectations of the academic setting may not always transfer to other work environments. As (...)
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  12.  37
    One Size Doesn’t Fit All.Camille Nebeker - 2012 - Teaching Ethics 12 (2):53-56.
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  13.  3
    One Size Doesn’t Fit All.Camille Nebeker - 2012 - Teaching Ethics 12 (2):53-56.
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  14.  19
    Realizing Present and Future Promise of DIY Biology and Medicine through a Trust Architecture.Lisa M. Rasmussen, Christi J. Guerrini, Todd Kuiken, Camille Nebeker, Alex Pearlman, Sarah B. Ware, Anna Wexler & Patricia J. Zettler - 2020 - Hastings Center Report 50 (6):10-14.
    The speed and scale of the COVID‐19 pandemic has highlighted the limits of current health systems and the potential promise of non‐establishment research such as “DIY” research. We consider one example of how DIY research is responding to the pandemic, discuss the challenges faced by DIY research more generally, and suggest that a “trust architecture” should be developed now to contribute to successful future DIY efforts.
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