Results for 'Community-Based Research Protocol '

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  1. Community-Based Research Protocol on Transboundary Impacts: Fishery Resources, Ecosystem and Communities’ Livelihood.Narith Por, Pichdara Lonn, Solany Kry & Chimor Mor (eds.) - 2022 - Cambodia: My Village.
    The developments along the Mekong River, including in Cambodia, have boomed. There were 755 dams. Of these, 537 have been completed, and 152 have been planned or proposed. Of these, 52 were under construction, and 14 have been canceled or suspended. Of these dams, 392 were hydropower, 337 were irrigation, and 26 were other types (CGIAR, 2015). Even though some officials saw economic development as a result of the hydropower dam, the negative impacts of hydropower dams were seen by many (...)
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  2.  54
    (1 other version)Governing Well in Community-Based Research: Lessons from Canada’s HIV Research Sector on Ethics, Publics and the Care of the Self.Adrian Guta, Stuart J. Murray, Carol Strike, Sarah Flicker, Ross Upshur & Ted Myers - 2017 - Public Health Ethics 10 (3).
    In this paper, we extend Michel Foucault’s final works on the ‘care of the self’ to an empirical examination of research practice in community-based research (CBR). We use Foucault’s ‘morality of behaviors’ to analyze interview data from a national sample of Canadian CBR practitioners working with communities affected by HIV. Despite claims in the literature that ethics review is overly burdensome for non-traditional forms of research, our findings suggest that many researchers using CBR have an (...)
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  3.  29
    Finding middle ground: negotiating university and tribal community interests in communitybased participatory research.Selina A. Mohammed, Karina L. Walters, June LaMarr, Teresa Evans-Campbell & Sheryl Fryberg - 2012 - Nursing Inquiry 19 (2):116-127.
    MOHAMMED SA, WALTERS KL, LAMARR J, EVANS‐CAMPBELL T and FRYBERG S. Nursing Inquiry 2012; 19: 116–127 [Epub ahead of print]Finding middle ground: negotiating university and tribal community interests in communitybased participatory researchCommunity‐based participatory research (CBPR) has been hailed as an alternative approach to one‐sided research endeavors that have traditionally been conducted on communities as opposed to with them. Although CBPR engenders numerous relationship strengths, through its emphasis on co‐sharing, mutual benefit, and community capacity (...)
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  4.  21
    The role of community advisory boards in community-based HIV clinical trials: a qualitative study from Tanzania.Blandina T. Mmbaga, Eligius Lyamuya, Emmanuel Balandya, Nathanael Sirili, Bruno F. Sunguya & Godwin Pancras - 2022 - BMC Medical Ethics 23 (1):1-10.
    BackgroundCommunity Advisory Boards (CAB) have become essential organs of involving communities in HIV clinical trials especially in developing countries. However, limited empirical evidence exists on the role of CABs in low and middle-income countries including Tanzania. This study aims at exploring the role of CABs in community-based HIV clinical trials conducted in Tanzania.MethodologyWe adopted a phenomenological approach to purposefully select HIV clinical trial stakeholders. These included CAB members, researchers and Institutional Review Board (IRB) members in Tanzania. We conducted (...)
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  5. The institutional review board is an impediment to human research: the result is more animal-based research.Mark J. Rice - 2011 - Philosophy, Ethics, and Humanities in Medicine 6:12.
    Biomedical research today can be generally classified as human-based or nonhuman animal-based, each with separate and distinct review boards that must approve research protocols. Researchers wishing to work with humans or human tissues have become frustrated by the required burdensome approval panel, the Institutional Review Board. However, scientists have found it is much easier to work with the animal-based research review board, the Institutional Animal Care and Use Committee. Consequently, animals are used for investigations (...)
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  6.  22
    Community protocols for researchers: using sketches to communicate interaction guidelines.Naska Goagoses, Heike Winschiers-Theophilus & Tariq Zaman - 2020 - AI and Society 35 (3):675-687.
    Reviews of research and development collaborations with indigenous communities have exhibited numerous challenges related to researcher–community interactions. Based on many accounts of indiscretions, indigenous communities have begun generating conduct guidelines for researchers. However, the effectiveness of their chosen communication methods, guaranteeing appropriate behavior of the researchers, has not been established. This research contributes to an ongoing debate around appropriate ethical conduct of researchers in situ. The aim of this study was to investigate the interpretation accuracy of (...)
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  7. Plenary Discussion: Towards a Socio-technical Research Agenda for Community Informatics-Cryptographic Algorithms and Protocols-Public-Key Encryption from ID-Based Encryption Without One-Time.Chik How Tan - 2006 - In O. Stock & M. Schaerf, Lecture Notes In Computer Science. Springer Verlag. pp. 450-459.
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  8.  35
    Recognising values and engaging communities across cultures: towards developing a cultural protocol for researchers.Rakhshi Memon, Muqaddas Asif, Ameer B. Khoso, Sehrish Tofique, Tayyaba Kiran, Nasim Chaudhry, Nusrat Husain & Sarah J. L. Edwards - 2021 - BMC Medical Ethics 22 (1):1-8.
    Efforts to build research capacity and capability in low and middle income countries (LMIC) has progressed over the last three decades, yet it confronts many challenges including issues with communicating or even negotiating across different cultures. Implementing global research requires a broader understanding of community engagement and participatory research approaches. There is a considerable amount of guidance available on community engagement in clinical trials, especially for studies for HIV/aids, even culturally specific codes for recruiting vulnerable (...)
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  9. Community-based research.Jennifer A. Bellamy - 2006 - In Ângela Guimarães Pereira, Sofia Guedes Vaz & Sylvia S. Tognetti, Interfaces between science and society. Sheffield, UK: Greenleaf.
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  10.  21
    Community-Based Research and Changes in the Research Landscape.Peter N. Levesque & Jill Chopyak - 2002 - Bulletin of Science, Technology and Society 22 (3):203-209.
    This article argues that community-based research (CBR)—research that includes the participation of “lay” citizens in the research process—is changing the process of research and knowledge production. The article is an initial attempt to examine the outcomes of CBR and the impact such research is having on knowledge development and funding trends in North America. The article concludes with a set of policy recommendations and areas for further research.
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  11. Genetically engineered mosquitoes, Zika and other arboviruses, community engagement, costs, and patents: Ethical issues.Zahra Meghani & Christophe Boëte - 2018 - PLoS Neglected Tropical Diseases 7 (12).
    Genetically engineered (GE) insects, such as the GE OX513A Aedes aegypti mosquitoes, have been designed to suppress their wild-type populations so as to reduce the transmission of vector-borne diseases in humans. Apart from the ecological and epidemiological uncertainties associated with this approach, such biotechnological approaches may be used by individual governments or the global community of nations to avoid addressing the underlying structural, systemic causes of those infections... We discuss here key ethical questions raised by the use of GE (...)
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  12.  48
    Debating Ethics in HIV Research: Gaps between Policy and Practice in Nigeria.Morenike Oluwatoyin Folayan, Kristin Peterson, Bridget Haire, Brandon Brown, Kadiri Audu, Olumide Makanjuola, Babatunde Pelemo & Vicki Marsh - 2014 - Developing World Bioethics 15 (3):214-225.
    HIV prevention is a critical health issue in Nigeria; a country that has one of the worst HIV epidemic profiles in the world. With 270,000 new infections in 2012, Nigeria is a prime site for HIV prevention research. One effect of the HIV epidemic has been to revolutionalise ethical norms for the conduct of research: it is now considered unethical to design and implement HIV related studies without community engagement. Unfortunately, there is very little commensurate effort in (...)
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  13.  75
    Confronting Condescending Ethics: How Community-Based Research Challenges Traditional Approaches to Consent, Confidentiality, and Capacity. [REVIEW]Colleen Reid & Elana Brief - 2009 - Journal of Academic Ethics 7 (1-2):75-85.
    Community based research is conducted by, for, and with the participation of community members, and aims to ensure that knowledge contributes to making a concrete and constructive difference in the world (The Loka Institute 2002). Yet decisions about research ethics are often controlled outside the research community itself. In this analysis we grapple with the imposition of a community confidentiality clause and the implications it had for consent, confidentiality, and capacity in a (...)
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  14.  33
    Ethical challenges in home-based care: A systematic literature review.Anne Kari Tolo Heggestad, Morten Magelssen, Reidar Pedersen & Elisabeth Gjerberg - 2021 - Nursing Ethics 28 (5):628-644.
    Because of the transfer of responsibility from hospitals to community-based settings, providers in home-based care have more responsibilities and a wider range of tasks and responsibilities than before, often with limited resources. The increased responsibilities and the complexity of tasks and patient groups may lead to several ethical challenges. A systematic search in the databases MEDLINE, CINAHL, and SveMed+ was carried out in February 2019 and August 2020. The research question was translated into a modified PICO (...)
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  15.  59
    The ethics of community-based research with people who use drugs: results of a scoping review.Rusty Souleymanov, Dario Kuzmanović, Zack Marshall, Ayden I. Scheim, Mikiki Mikiki, Catherine Worthington & Margaret Millson - 2016 - BMC Medical Ethics 17 (1):25.
    BackgroundDrug user networks and community-based organizations advocate for greater, meaningful involvement of people with lived experience of drug use in research, programs and services, and policy initiatives. Community-based approaches to research provide an opportunity to engage people who use drugs in all stages of the research process. Conducting community-based participatory research with people who use drugs has its own ethical challenges that are not necessarily acknowledged or supported by institutional ethics (...)
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  16.  36
    Whose history? Whose future? Expanding the exploration of lived experience in ethics consultation to include empirical patient and family and community-based research.Catherine Myser - 2001 - American Journal of Bioethics 1 (4):1 – 3.
    (2001). Whose History? Whose Future? Expanding the Exploration of Lived Experience in Ethics Consultation to Include Empirical Patient and Family and Community-Based Research. The American Journal of Bioethics: Vol. 1, No. 4, pp. 1-3.
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  17.  22
    Community-Based Research as an Alternative to Traditional Research Courses as a Method of Promoting Undergraduate Publication.Diane Mello-Goldner - 2019 - Frontiers in Psychology 10.
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  18.  67
    Ethical Dilemmas in Community-Based Research: Working with Vulnerable Youth in Rural Communities. [REVIEW]Natalie Clark, Sarah Hunt, Georgia Jules & Trevor Good - 2010 - Journal of Academic Ethics 8 (4):243-252.
    Ethical Dilemmas in Community-Based Research: Working with Vulnerable Youth in Rural Communities Content Type Journal Article DOI 10.1007/s10805-010-9123-y Authors Natalie Clark, Thompson Rivers University, Kamloops, BC Canada V2C 5N3 Sarah Hunt, Simon Fraser University, Burnaby, Canada Georgia Jules, Thompson Rivers University, Kamloops, BC Canada V2C 5N3 Trevor Good, University of Victoria, Victoria, Canada Journal Journal of Academic Ethics Online ISSN 1572-8544 Print ISSN 1570-1727 Journal Volume Volume 8 Journal Issue Volume 8, Number 4.
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  19.  28
    Shifting from research governance to research ethics: A novel paradigm for ethical review in community-based research.Jay Marlowe & Martin Tolich - 2015 - Research Ethics 11 (4):178-191.
    This study examines a significant gap in the role of providing ethical guidance and support for community-based research. University and health-based ethical review committees in New Zealand predominantly serve as ‘gatekeepers’ that consider the ethical implications of a research design in order to protect participants and the institution from harm. However, in New Zealand, community-based researchers routinely do not have access to this level of support or review. A relatively new group, the New (...)
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  20.  70
    Students as members of university-based academic research ethics boards: A natural evolution.Nancy A. Walton, Alexander G. Karabanow & Jehangir Saleh - 2008 - Journal of Academic Ethics 6 (2):117-127.
    University based academic Research Ethics Boards (REB) face the particularly difficult challenge of trying to achieve representation from a variety of disciplines, methodologies and research interests. Additionally, many are currently facing another decision – whether to have students as REB members or not. At Ryerson University, we are uniquely situated. Without a medical school in which an awareness of the research ethics review process might be grounded, our mainly social science and humanities REB must also educate (...)
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  21.  42
    The Vulnerability of Immigrants in Research: Enhancing Protocol Development and Ethics Review.Robert H. McLaughlin & Theresa Alfaro-Velcamp - 2015 - Journal of Academic Ethics 13 (1):27-43.
    Vulnerabilities often characterize the availability of immigrant populations of interest in social behavioral science, public health, and medical research. Refugees, asylum seekers, and undocumented immigrants present unique vulnerabilities relevant to protocol development as well as ethics review procedures and criteria. This paper describes vulnerable populations in relation to the Belmont Report and US federal regulations for the protection of human subjects, both of which are commonly used in international research contexts. It argues for safeguards for immigrants comparable (...)
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  22.  15
    Community-based health care providers as research participant recruitment gatekeepers: ethical and legal issues in a real-world case example.Karen L. Celedonia, Michael W. Valenti, Marcelo Corrales Compagnucci & Michael Lowery Wilson - 2020 - Research Ethics 17 (2):242-250.
    Community-based mental health care providers are increasingly contacted by external researchers for research study recruitment. Unfortunately, many do not possess the resources or personn...
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  23.  27
    A systematic review of research on augmentative and alternative communication brain-computer interface systems for individuals with disabilities.Betts Peters, Brandon Eddy, Deirdre Galvin-McLaughlin, Gail Betz, Barry Oken & Melanie Fried-Oken - 2022 - Frontiers in Human Neuroscience 16.
    Augmentative and alternative communication brain-computer interface systems are intended to offer communication access to people with severe speech and physical impairment without requiring volitional movement. As the field moves toward clinical implementation of AAC-BCI systems, research involving participants with SSPI is essential. Research has demonstrated variability in AAC-BCI system performance across users, and mixed results for comparisons of performance for users with and without disabilities. The aims of this systematic review were to describe study, system, and participant characteristics (...)
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  24.  98
    Community-Based Participatory Research for Improved Mental Health.Laura Weiss Roberts, Catherine Bruss, Christiane Brems, Mark E. Johnson, Sarah Dewane & Jane Smikowski - 2009 - Ethics and Behavior 19 (6):461-478.
    Community-based participatory research (CBPR) focuses on specific community needs, and produces results that directly address those needs. Although conducting ethical CBPR is critical to its success, few academic programs include this training in their curricula. This article describes the development and evaluation of an online training course designed to increase the use of CBPR in mental health disciplines. Developed using a participatory approach involving a community of experts, this course challenges traditional research by introducing (...)
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  25.  20
    Handbook of Methodological Approaches to Community-Based Research: Qualitative, Quantitative, and Mixed Methods.Leonard Jason & David Glenwick (eds.) - 2016 - Oxford University Press USA.
    The field of community psychology has focused on individuals' and groups' behavior in interaction with their social contexts, with an emphasis on prevention, early intervention, wellness promotion, and competency development. Over the past few decades, however, community-based applications of the newest research methodologies have not kept pace with the development of theory and methodology with regard to multilevel data collection and analysis. The Handbook of Methodological Approaches to Community-Based Research is intended to aid (...)
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  26.  19
    ACCORD guideline for reporting consensus-based methods in biomedical research and clinical practice: a study protocol.Niall Harrison, Robert Matheis, Patricia Logullo, Keith Goldman, Esther J. van Zuuren, Ellen L. Hughes, David Tovey, Christopher C. Winchester, Amy Price, Amrit Pali Hungin & William T. Gattrell - 2022 - Research Integrity and Peer Review 7 (1).
    BackgroundStructured, systematic methods to formulate consensus recommendations, such as the Delphi process or nominal group technique, among others, provide the opportunity to harness the knowledge of experts to support clinical decision making in areas of uncertainty. They are widely used in biomedical research, in particular where disease characteristics or resource limitations mean that high-quality evidence generation is difficult. However, poor reporting of methods used to reach a consensus – for example, not clearly explaining the definition of consensus, or not (...)
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  27.  32
    ‘But how will you ensure the objectivity of the researcher?’ Guidelines to address possible misconceptions about the ethical imperatives of community-based research.Samantha Kahts-Kramer & Lesley Wood - 2023 - Research Ethics 19 (1):1-17.
    Many reviewers of applications for ethical approval of research at universities struggle to understand what is considered ethical conduct in community-based research (CBR). Their difficulty in understanding CBR and the ethics embedded within it is, in part, due to the exclusion of CBR from researchers’ mandatory research ethics training. After all, CBR challenges both pedagogically and epistemologically the dominant paradigm/s whose worldviews, values and inherent structures of power help sustain the status quo within academic institutions (...)
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  28.  15
    Is Community-Based Participatory Research Postnormal Science?David Bidwell - 2009 - Science, Technology, and Human Values 34 (6):741-761.
    Conventional, positivist science is not well suited for addressing the contemporary risk landscape. To address high-uncertainty, high-stakes risks, Funtowicz and Ravetz have called for a postnormal science. Two key characteristics of postnormal science are the involvement of an extended peer community and the deliberation of extended facts. The health research community has responded to the shortcomings of normal science with approaches to field research, known collectively as community-based participatory research. A review of case (...)
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  29.  47
    Improving access to community-based pulmonary rehabilitation: 3R protocol for real-world settings with cost-benefit analysis.Alda Marques, Cristina Jácome, Patrícia Rebelo, Cátia Paixão, Ana Oliveira, Joana Cruz, Célia Freitas, Marília Rua, Helena Loureiro, Cristina Peguinho, Fábio Marques, Adriana Simões, Madalena Santos, Paula Martins, Alexandra André, Sílvia De Francesco, Vitória Martins, Dina Brooks & Paula Simão - 2019 - BMC Public Health 19 (1):676.
    Pulmonary rehabilitation has demonstrated patients’ physiological and psychosocial improvements, symptoms reduction and health-economic benefits whilst enhances the ability of the whole family to adjust to illness. However, PR remains highly inaccessible due to lack of awareness of its benefits, poor referral and availability mostly in hospitals. Novel models of PR delivery are needed to enhance its implementation while maintaining cost-efficiency. We aim to implement an innovative community-based PR programme and assess its cost-benefit. A 12-week community-based PR (...)
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  30.  44
    More Is Required of Us: Complicating an Ontology of Experience at the Heart of Community-Based Research.Jerry Rosiek - 2023 - The Pluralist 18 (1):81-94.
    In lieu of an abstract, here is a brief excerpt of the content:More Is Required of Us: Complicating an Ontology of Experience at the Heart of Community-Based ResearchJerry Rosiekit is both unsurprising and reassuring that the Society for the Advancement of American Philosophy would host an invited lecture on community-university research collaborations. One of the most distinctive features of the tradition of philosophy on this continent has been the insistence that lived experience is the ultimate source (...)
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  31.  11
    A Framework to Integrate Ethical, Legal, and Societal Aspects (ELSA) in the Development and Deployment of Human Performance Enhancement (HPE) Technologies and Applications in Military Contexts.Human Behaviour Marc Steen Koen Hogenelst Heleen Huijgen A. Tno, The Hague Collaboration, Human Performance The Netherlandsb Tno, The Netherlandsc Tno Soesterberg, Aerospace Warfare Surface, The NetherlAndsmarc Steen Works As A. Senior Research ScientIst At Tno The Hague, Value-Sensitive Design Human-Centred Design, Virtue Ethics HIs Mission is To Promote The Design Applied Ethics Of Technology, Flourish Koen Hogenelst Works As A. Senior Research Scientist at Tno ApplicAtion Of Technologies In Ways That Help To Create A. Just Society In Which People Can Live Well Together, His Research COncentrates on Measuring A. Background In Neuroscience, Cognitive Performance Improving Mental Health, Military Domains HIs Goal is To Align Experimental Research In Both The Civil, Field-Based Research Applied, Practical Use To Pave The Way For Implementation, Consultant At Tno Impact Heleen Huijgen Is A. Legal Scientist & StrAtegic Environment Her MIssion is To Create Legal Safeguards Fo Technologies - 2025 - Journal of Military Ethics 23 (3):219-244.
    In order to maximize human performance, defence forces continue to explore, develop, and apply human performance enhancement (HPE) methods, ranging from pharmaceuticals to (bio)technological enhancement. This raises ethical, legal, and societal concerns and requires organizing a careful reflection and deliberation process, with relevant stakeholders. We discuss a range of ethical, legal, and societal aspects (ELSA), which people involved in the development and deployment of HPE can use for such reflection and deliberation. A realistic military scenario with proposed HPE application can (...)
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  32.  29
    Team process in communitybased participatory research on maternity care in the Dominican Republic.Jennifer Foster, Fidela Chiang, Rebecca C. Hillard, Priscilla Hall & Annemarie Heath - 2010 - Nursing Inquiry 17 (4):309-316.
    FOSTER J, CHIANG F, HILLARD RC, HALL P and HEATH A. Nursing Inquiry 2010; 17: 309–316 Team process in communitybased participatory research on maternity care in the Dominican RepublicA cross‐cultural team consisting of US trained academic midwife researchers, Dominican nurses, and Dominican community leaders have partnered in this international nursing and midwifery communitybased participatory research (CBPR) project in the Dominican Republic to understand the community experience with publicly funded maternity services. The purpose (...)
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  33.  78
    Community based trials and informed consent in rural north India.A. DeCosta - 2004 - Journal of Medical Ethics 30 (3):318-323.
    Disease control has increasingly shifted towards large scale, disease specific, public health interventions. The emerging problems of HIV, hepatitis, malaria, typhoid, tuberculosis, childhood pneumonia, and meningitis have made community based trials of interventions a cost effective long term investment for the health of a population. The authors conducted this study to explore the complexities involved in obtaining informed consent to participation in rural north India, and how people there make decisions related to participation in clinical research.
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  34.  29
    Place-Based Philosophical Activism on the US–Mexico Border.Mariana Alessandri - 2021 - Hypatia 36 (2):370-383.
    Before the Department of Homeland Security instituted the Migrant Protection Protocols in January 2019, as many as 1,000 Central American refugees passed each day through Catholic Charities’ Humanitarian Respite Center, where they received food, clothing, a shower, toiletries, and sandwiches for the road. Sister Norma Pimentel founded the Humanitarian Respite Center in 2014 to “restore human dignity” to refugees who had been degraded and vilified during their dangerous journeys north, not least by way of their processing by the US government. (...)
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  35.  73
    A case study of community-based participatory research ethics: The healthy public housing initiative.Doug Brugge & Alison Kole - 2003 - Science and Engineering Ethics 9 (4):485-501.
    We conducted and analyzed qualitative interviews with 12 persons working on the Healthy Public Housing Initiative in Boston, Massachusetts in 2001. Our goal was to generate ideas and themes related to the ethics of the community-based participatory research in which they were engaged. Specifically, we wanted to see if we found themes that differed from conventional research that is based on an individualistic ethics. There were clearly distinct ethical issues raised with respect to projects and (...)
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  36.  10
    Nurses' tension-based ethical decision making in rural acute care settings.Manal M. Alzghoul & Kristen Jones-Bonofiglio - 2020 - Nursing Ethics 27 (4):1032-1043.
    Background Nurses in acute care are frequently involved in ethical decision making and experience a higher prevalence of ethical conflicts and dilemmas. Nurses in underresourced rural acute care settings also are likely to face unique ethical challenges. However, rarely have the particular contexts of these experiences in rural acute care settings been researched. A culture of silence and fear in small towns has made exploring these issues difficult. Objectives To explore registered nurses’ experiences of ethical issues and ethical decision making (...)
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  37.  55
    Betwixt & Between: Peer Recruiter Proximity in Community-Based Research.Sally Bean & Diego S. Silva - 2010 - American Journal of Bioethics 10 (3):18-19.
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  38.  42
    Opportunities, challenges and ethical issues associated with conducting community-based participatory research in a hospital setting.C. Strike, A. Guta, K. de Prinse, S. Switzer & S. Chan Carusone - 2016 - Research Ethics 12 (3):149-157.
    Community-based participatory research is growing in popularity as a research strategy to engage communities affected by health issues. Although much has been written about the benefits of using CBPR with diverse groups, this research has usually taken place in community-based organizations which offer social services and programs. The purpose of this article is to explore the opportunities and challenges encountered during a CBPR project conducted in a small hospital serving people living with HIV (...)
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  39.  79
    Addressing the Ethical Challenges of Community-Based Research.Kate York, Aaron D. Profitt, Fawzeyah Al-Awadhi, Maureen Andreadis, Mary Brydon-Miller & Courtney Hamilton - 2012 - Teaching Ethics 12 (2):157-162.
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  40.  27
    Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project.Paul Lacaze, Louise Keogh, Margaret Otlowski, Ingrid Winship, Kristine Barlow-Stewart, Martin Delatycki, Penny Gleeson, Tiffany Boughtwood, Andrea Belcher, Aideen McInerney-Leo & Jane Tiller - 2021 - BMC Medical Ethics 22 (1):1-14.
    BackgroundThe use of genetic test results in risk-rated insurance is a significant concern internationally, with many countries banning or restricting the use of genetic test results in underwriting. In Australia, life insurers’ use of genetic test results is legal and self-regulated by the insurance industry (Financial Services Council (FSC)). In 2018, an Australian Parliamentary Inquiry recommended that insurers’ use of genetic test results in underwriting should be prohibited. In 2019, the FSC introduced an industry self-regulated moratorium on the use of (...)
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  41.  29
    Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review.Cindy Peltier, Sarah Dickson, Viviane Grandpierre, Irina Oltean, Lorrilee McGregor, Emilie Hageltorn & Nancy L. Young - 2024 - BMC Medical Ethics 25 (1):1-12.
    Background Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to identify culturally safe research consent processes that respect the rights of Indigenous children, the rights and responsibilities of parents or caregivers, and community protocols. Methods We followed PRISMA guidelines and Arksey and O’Malley’s approach for charting and (...)
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  42.  40
    The Critical Care Research Network: a partnership in communitybased research and research transfer.Sean P. Keenan, Claudio M. Martin, Jennifer D. . Kossuth Ma, Jeannette Eberhard & William J. Sibbald - 2000 - Journal of Evaluation in Clinical Practice 6 (1):15-22.
  43.  45
    Community-Based Participatory Research in United States Bioethics: Steps Toward More Democratic Theory and Policy.Catherine Myser - 2004 - American Journal of Bioethics 4 (2):67-68.
  44. The Critical Care Research Network: a partnership in community-based research and research transfer Sean P. Keenan.C. M. Martin, J. D. Kossuth, J. Eberhard & W. J. Sibbald - 2000 - Journal of Evaluation in Clinical Practice 6 (1):15-22.
     
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  45.  31
    The Critical Care Research Network: a partnership in communitybased research and research transfer.Sean P. Keenan, Claudio M. Martin, Jennifer D. Kossuth Ma, Jeannette Eberhard & William J. Sibbald - 2000 - Journal of Evaluation in Clinical Practice 6 (1):15-22.
  46.  39
    Reflections on research ethics in a public health emergency: Experiences of Brazilian women affected by Zika.Ilana Ambrogi, Luciana Brito & Sergio Rego - 2023 - Developing World Bioethics 23 (2):138-146.
    In Brazil, the epicenter of the Zika crisis, brown, black, and indigenous poor women living in municipalities with scarce resources were disproportionally affected. The gendered consequences of the epidemic exposed how intersectional lenses are central to understand the impact of public health emergencies in the lives of women and girls. The demand for Zika-affected children and women to be research participants is relevant for an ethical analysis of participant protection procedures during a crisis. We investigated how women experienced (...) participation by analyzing their narratives. Two-year-long longitudinal qualitative study in Brazilian sites located in the epidemic's epicenter was performed using mixed methods: ethnography with women from two distinct states and individual semi-structured interviews with five women in different Zika-affected states, four of which were community leaders. All women in the study were mothers or grandmothers of Zika-affected children. Thematic analysis was used for data evaluation. Women perceived being pressured to participate in research and a lack of benefit sharing. Structural determinants of gender inequality, such as its effect on power distribution, were found to impact research participant protection. Formal procedures for research protocols approvals were insufficient in protecting participants because these instruments were unable to account for structural aspects. Communitarian mobilization, through WhatsApp groups, was found to be an important mechanism to create conditions to challenge oppressive structures. Strengthening public health, effective community-based participation in research planning and implantation of ethical strategies that promotes gender equality can have transformative effect on unequal power structures and promote participant protection. (shrink)
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    Legal dissemination protections in community-based participatory health equity research.Doris M. Boutain, Marie-Anne Sanon Rosemberg, Eunjung Kim & Robin A. Evans-Agnew - forthcoming - Nursing Ethics.
    Background There are legal protections for nurse researchers at public universities who employ community-based participatory research (CBPR) in research about social or health inequities. Dissemination of CBPR research data by researchers or participants may divulge unjust laws and create an imperative for university involvement. Research Question What are United States-based legal dissemination protections for CBPR health equity nurse researchers? Research Design Three case examples employing CBPR are examined: 1) a mixed methods study (...)
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    Communication-Based Book Recommendation in Computational Social Systems.Long Zuo, Shuo Xiong, Xin Qi, Zheng Wen & Yiwen Tang - 2021 - Complexity 2021:1-10.
    This paper considers current personalized recommendation approaches based on computational social systems and then discusses their advantages and application environments. The most widely used recommendation algorithm, personalized advice based on collaborative filtering, is selected as the primary research focus. Some improvements in its application performance are analyzed. First, for the calculation of user similarity, the introduction of computational social system attributes can help to determine users’ neighbors more accurately. Second, computational social system strategies can be adopted to (...)
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    Co-design and implementation research: challenges and solutions for ethics committees.Felicity Goodyear-Smith, Claire Jackson & Trisha Greenhalgh - 2015 - BMC Medical Ethics 16 (1):1-5.
    BackgroundImplementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised controlled trials.DiscussionImplementation science commonly involves the partnership of researchers and stakeholders, attempting to understand and encourage uptake of completed or piloted research. A co-creation approach involves collaboration between researchers and end users from the onset, in question framing, (...)
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    Guidelines for Community-based Ethics Review of Children’s Science Fair Projects.Martin Tolich - 2008 - Journal of Bioethical Inquiry 5 (4):303-310.
    Low-level community based ethics committees staffed by teachers, parents and community representatives can readily review children’s science fair projects subject to the revision of two core assumptions currently governing children’s Science Fairs. The first part of the paper recasts the New Zealand Royal Society guidelines from its primary emphasis on risk to a new assumption, without benefit there can be no risk. Equally, this revision gives more prominence to the participant information sheet, allowing it to act as (...)
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