• I didn’t have anything to decide, I wanted to help my kids” – An interview based study of consent procedures in sampling human biological material for genetic research in rural Pakistan

      Kongsholm, Nana Cecilie Halmsted; Lassen, Jesper; Sandøe, Peter (2018-06-28)
      Background: Individual, comprehensive, and written informed consent is broadly considered an ethical obligation in research involving the sampling of human material. In developing countries, however, local conditions, such as widespread illiteracy, low levels of education, and hierarchical social structures, complicate compliance with these standards. As a result, researchers may modify the consent process to secure participation. To evaluate the ethical status of such modified consent strategies it is necessary to assess the extent to which local practices accord with the values underlying informed consent. Methods: Over a 2-week period in April 2014 we conducted semistructured interviews with researchers from a genetic research institute in rural Pakistan and families who had given blood samples for their research. Interviews with researchers focused on the institute’s requirements for consent, and the researchers’ strategies for and experiences with obtaining consent in the field. Interviews with donors focused on their motivation for donating samples, their experience of consent and donation, and what factors were central in their decisions to give consent. Results: Researchers often reported modifications to consent procedures suited to the local context, standardly employing oral and elder consent, and tailoring information to the social education level of donor families. Central themes in donors’ accounts of their decision to consent were the hope of getting something out of their participation and their remarkably high levels of trust in the researchers. Several donor accounts indicated a degree of confusion about participation and diagnosis, resulting in misconceived expectations of therapeutic benefits. Conclusions: We argue that while building and maintaining trusting relationships in research is important—not least in developing countries—strategies that serve this endeavor should be supplemented with efforts to ensure proper provision and understanding of relevant information, specifically about the nature of research and measures for individual consent and opt-out.
    • “I Don't Think that Any Peer Review Committee . . . Would Ever ‘Get’ What I Currently Do”: How Institutional Metrics for Success and Merit Risk Perpetuating the (Re)production of Colonial Relationships in Community-Based Participatory Research Involving Indigenous Peoples in Canada

      Heather Castleden; Paul Sylvestre; Debbie Martin; Mary McNally (University of Western Ontario, 2015-09-01)
      This article reports on findings from a study that explored how a group of leading health researchers who do Indigenous community-engaged research (n = 20) in Canada envision enacting ethically sound research with Indigenous communities, as well as the concomitant tensions associated with doing so. In particular, we explore how institutional metrics for assessing merit and granting tenure are seen to privilege conventional discourses of productivity and validity in research and, as a result, are largely incongruent with the relational values associated with decolonizing research through community-based participatory health research. Our findings reveal that colonial incursion from the academy risk filtering into such research agendas and create a conflict between relational accountability to community partners and academic accountability to one’s discipline and peers.
    • "I think it's a bit early for now": impact of psychological factors on drafting advance directives among cancer patients Running title: Advance directives for cancer patients

      Service d'oncologie multidisciplinaire innovations thérapeutiques [Hôpital Nord - APHM] ; Assistance Publique - Hôpitaux de Marseille (APHM)- Hôpital Nord [CHU - APHM]; Laboratoire de Psychologie Sociale (LPS) ; Aix Marseille Université (AMU); Assistance Publique - Hôpitaux de Marseille (APHM); Cannone, Patrice; Tomasini, Pascale; PAUL, Merlin; Barlesi, Fabrice; Dany, Lionel (HAL CCSDTaylor & Francis (Routledge), 2019-01-07)
      International audience
    • 'I' is for 'Insider': Practitioner Research in Schools

      Schaenen, Inda; Kohnen, Angela; Flinn, Pablo; Saul, Wendy; Zeni, Jane (DEU, 2015-01-15)
      "In this paper we five teachers and teacher educators draw upon our personal
 classroom experiences in order to explore the definitions, descriptions,
 and nature of educational practitioner research, what we call teacher
 research. We highlight the tensions that can exist between and among
 teacher research, institutional needs and macro-policies, and argue that as
 both stance and method, teacher research can complement traditional, outsider-
 driven social science research. Further, practitioner research can
 check the errors and inequitable outcomes which may result from educational
 policies strictly reliant on the large-scale quantitative research designs
 currently dominant in the United States." (author's abstract)
    • <i>Children in Medical Research: Access versus Protection</i> (review)

      Raymond C. Barfield; Christopher Church (The Johns Hopkins University Press, 2008-05-04)
      Perspectives in Biology and Medicine - Volume 51, Number 2, Spring 2008
    • <i>Dark Medicine: Rationalizing Unethical Medical Research</i> (review)

      Susan E. Lederer (The Johns Hopkins University Press, 2009-03-27)
      Bulletin of the History of Medicine - Volume 83, Number 1, Spring 2009
    • ICT Student Teachers’ Judgments and Justifications about Ethical Issues

      Turgay Alakurt; Salih Bardakcı; Hafize KESER (Turkish Online Journal of Qualitative Inquiry (TOJQI), 2012-04-01)
      In this study, Turkish ICT student teachers’ judgments and justifications in four scenarios involving ICT-related ethical problems were investigated. Scenarios were designed based on Mason’s (1986) four ethical issues: privacy, accuracy, property and accessibility. The study was carried out in the fall of 2010. We used the critical incidents technique (CIT) - a qualitative research approach- and the data were gathered via a structured questionnaire. The questionnaire was conducted face-toface with an in-person interview. Participants were 35 ICT student teachers from the Faculty of Educational Science at Ankara University. The associations between different categorical variables were analysed with Fisher’s exact test. Open-ended questions were analysed through content analysis. The findings revealed that gender does not affect the ethical judgments and justifications of ICT student teachers. Furthermore the same reasons and justifications were reported by ICT student teachers who have taken course in ethic and those who have not taken the course. Moreover, out of the four issues considered in this study, accessibility was found as the most controversial issue. In addition to that it was observed that a number of ICT student teachers do not attain the right justifications due to the lack of knowledge on copyrights, intellectual property and the policies of web sites
    • ICU research: the impact of invasiveness on informed consent

      Gigon, Fabienne; Merlani, Paolo; Chenaud, Catherine; Ricou, Bara (2013)
      Studies into the preferences of patients and relatives regarding informed consent for intensive care unit (ICU) research are ongoing. We investigated the impact of a study&apos;s invasiveness on the choice of who should give consent and on the modalities of informed consent.
    • Identification of technology trend on Indonesian patent documents and research reports on chemistry and metallurgy fields

      Khoo, C.; Singh, D.; Chaudhry, A.S.; Rahayu, Endang Sri Rusmiyati; Hasibuan, Zainal A. (School of Communication &amp; Information, Nanyang Technological University, 2007-05-27)
      The aims of this study are: to identify technology trends by identifying core topics, prominence topics, and emerging topics; and to assess the overlap between research and development and patents on chemistry and metallurgy fields in Indonesia during 1993-1997. The technology trends are determined by measuring subject and keyword development on those fields. Co-words analysis is employed to measure the technology categories. The objects of this study are granted patents section C according to International Patent Classification (IPC) and research report documents which was collected from CD ROM of research reports on chemistry and metallurgy fields published by PDII-LIPI. Subjects analysis of patent document are measured based on the number of subclass in chemistry and metallurgy fields using IPC code of patent documents. Subjects analysis of research reports are measured based on the number of subclass in chemistry and metallurgy section using DDC21 system of research report documents. Co-words analysis is measured based on the co-occurrence frequencies of the keywords ap-peared in the research documents. The results showed that overlapping subject and keyword of patent documents and research report documents on chemistry and metallurgy fields in Indonesia during five years (1993 to 1997) was on the organic chemistry, especially on dyes and extraction. Another important subject in patent documents was human necessity, especially on pesticides, drugs, and detergents. The largest subject on research activities period was on food technology, especially on coconut oils, palm oils, and storage. Technology categories on research report documents show that there were no core top-ics of research activities in Indonesia during five years (1993 to 1997). The prominence topics were only on 1993 and 1996 namely fermentation process, storage processes, and drying apparatus. There were core topics, prominence topics and emerging topics on patent documents.
    • Identifying best practices for obtaining ethical consent and for data and sample collection in pediatric rheumatic diseases – the role of the EU-wide ethics process in real-life

      Kümmerle-Deschner, Jasmin (Prof. Dr.); Eikelberg, Andreas Jan Charles (Universität Tübingen, 2020-03-31)
      Rare pediatric diseases have incidences as low as 1/million, but the entire sum of all various those rare diseases still affects thousands, if not millions of young patients across Europe.&#xd; Scientists in every country have made substantial contributions to improve treatment strate-gies with the goal of developing early-onset therapies preventing irreversible organ damage and improving long-term prognosis.&#xd; International collaboration can foster progress, but still many scientists struggle with the immense variety of ethical requirements, the regulations for data and sample sharing and biobanking structures. A unified, standardized framework applicable for all member states of the European Union is still missing.&#xd; In order to design recommendations for this urgently needed standardization of the research process, we performed a systematic literature review and several real-life studies with the aim of identifying the best practices of and barriers to transnational pediatric research.&#xd; An ethics proposal was designed to evaluate the real-life work of research ethics boards across Europe.&#xd; A study on the investigator perspective was sent to multiple research partners to evaluate their level of experience and ideas to improve the current ways of conducting pediatric re-search. A study on the REB perspective was performed with REBs across Germany to ex-amine their structural and procedural differences. With these practical approaches, accom-panied by a comprehensive literature review, barriers for pediatric research have been iden-tified. Recommendations to overcome these barriers have been drafted, revised, and final-ized with the help of research ethics board members and European experts for ethical and legal aspects of pediatric research.&#xd; The results of the ethics proposal showed the greatest possible variety. Some research eth-ics boards have denied the proposal while others have approved it. The study on the inves-&#xd; 136&#xd; tigator perspective has shown a great need for more support of pediatricians involved in research projects. The study on the REB perspective supported the wide variety of findings of the ethics proposal with personnel composition and organizational characteristics differ-ing greatly. These findings have been analysed and led to a total of 21 recommendations. The issues that were addressed include 1) general principles, 2) ethics, 3) pediatric princi-ples, 4) consent to pediatric research, 5) pediatric data and biobanks, 6) sharing of data and samples and 7) commercialization and third parties.&#xd; The process of the evidence synthesis and the resulting recommendations were published in our study:&#xd; “Recommendations for collaborative paediatric research including biobanking in Europe: a Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) initiative.” 25&#xd; These recommendations for collaborative pediatric research on a European scale including data- and sample-biobanking and sharing across borders are the first of their kind and show the urgent need for a unified European legislative framework and evidence-based guidance for its implementation.&#xd; Children with rheumatic conditions and the many others suffering from rare diseases should no longer be left behind when life-changing research discoveries can be made.
    • Identity-Qua-Information and Ethics in the New Media

      Ivan Brian L. Inductivo (Lyceum of the Philippines University, Batangas, 2019-11-01)
      The exigency of a globally-oriented ‘information society’ requires an ethics that can provide&#13; guidance for decisions in new circumstances, such as New Media. New Media are means of communication&#13; using digital technologies, e.g., the internet in general, social media, computers, virtual worlds, websites,&#13; apps, human-computer interface, computer animation and interactive computer installations. Currently,&#13; there is an apparent dearth of relevant material and a growing need to develop an ethics which addresses&#13; the emerging technologies, the ubiquity of information, security and integrity of data, and the increasing&#13; scope of our digital engagement. Traditional normative theories of ethics are being revisited, rethought&#13; and reimagined apropos to this. Hence, this paper ascertains the context and implications of the nature of&#13; identities in the current information society, reevaluate prevailing ethical traditions and perspectives in the&#13; face of new media, and propose recommendation for an attempt at a rapprochement to reframe an ethics&#13; for new media. Ethical inquiry with contextual and normative review, under the philosophical research&#13; design, was used aptly as the methodology in this study to probe into a tenable ethical framework for the&#13; New Media paradigm. The proposed rapprochement intends to inform, challenge and provide a new&#13; precept for moral engagement among digitally active communities, such as the Philippine society.&#13; Implications of the findings of the research bade a synthetic ethical framework for ethicists, netizens and&#13; informational entities to reflect on and re-approach the contemporary digital milieu in a more inclusive&#13; and dynamic manner in light of the fluidity and complexity of new media platforms, the internet of things&#13; and the fourth industrial revolution
    • Ideological diversity, hostility, and discrimination in philosophy

      Peters, Uwe; Honeycutt, Nathan; De Block, Andreas; 2503; Jussim, Lee (ROUTLEDGE JOURNALS, TAYLOR &amp;amp; FRANCIS LTD, 2020-04-18)
      status: published

      Samara State University; Simashenkov, Pavel, (HAL CCSDModern European Researches, 2019-11-02)
      International audience
    • Il incombe au médecin de s’enquérir de l’état de santé du malade

      Vatier &amp; Associés - Association d'Avocats au Barreau de Paris; Université Paris Descartes - Paris 5 (UPD5); Institut Droit et Santé (IDS - U1145) ; Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Paris Descartes - Paris 5 (UPD5); Gautier, Mathieu; Guillo, Mathilde; Jaafar, Delphine; Zelcevic-Duhamel, Ana (HAL CCSD, 2018)
      International audience