• B.S. Johnson's The Unfortunates: Revisiting the Elegy

      Littérature, idéologies, représentations, XVIIIe-XIXe siècles (LIRE); Université Stendhal - Grenoble 3-École normale supérieure - Lyon (ENS Lyon)-Université Lumière - Lyon 2 (UL2)-Université Jean Monnet [Saint-Étienne] (UJM)-Centre National de la Recherche Scientifique (CNRS); Guignery, Vanessa (HAL CCSDPresses universitaires de la Méditerranée, 2011-12)
      International audience
    • Back from Hong Kong or ethics at the time of a genetic increase of the human person

      Neuroscience Paris Seine (NPS) ; Institut National de la Santé et de la Recherche Médicale (INSERM)-Sorbonne Université (SU)-Centre National de la Recherche Scientifique (CNRS)-Institut de Biologie Paris Seine (IBPS) ; Institut National de la Santé et de la Recherche Médicale (INSERM)-Sorbonne Université (SU)-Centre National de la Recherche Scientifique (CNRS)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Sorbonne Université (SU)-Centre National de la Recherche Scientifique (CNRS); Institut de Biologie Paris Seine (IBPS) ; Institut National de la Santé et de la Recherche Médicale (INSERM)-Sorbonne Université (SU)-Centre National de la Recherche Scientifique (CNRS); Chneiweiss, Herve (HAL CCSDEDP Sciences, 2019)
      International audience
    • Bad Blood in US Genome Research

      Greenberg, Daniel S. (2011-07-12)
      news
    • Bad Blood in US Genome Research

      Greenberg, Daniel S. (2011-07-12)
      news
    • Bad News About Bad News: The Disclosure of Risks to Insurability in Research Consent Processes

      Apold, Victoria Smith; Downie, Jocelyn (2016-01-09)
      One of the phenomena associated with research is "incidental findings," that is, unexpected findings made during the research, and outside the scope of the research, which have potential health importance. One underappreciated risk of incidental findings is the potential loss of the research subject's insurability; or if a research subject fails to disclose incidental findings when applying for insurance, the insurance contract may be voidable by the insurer. In this article, we seek to explain the insurability risks associated with incidental findings and to make recommendations for how researchers and research ethics committees should address the issue of disclosure of these risks.
    • Badminton players’ moral intentions : a factorial survey study into personal and contextual determinants

      De Waegeneer, Els; Constandt, Bram; Van Der Hoeven, Stef; Willem, Annick (2019)
      Improving and maintaining high ethical standards among athletes is a major challenge in sports, which requires sufficient knowledge on athletes’ moral intentions. This study advances our knowledge on athletes’ moral intentions by examining the personal and contextual determinants (factors) that influence moral intentions of badminton players. In a factorial survey study, a total of 171 participants were asked to respond to scenarios describing moral dilemmas in the context of badminton. This approach allows combining advantages from both classical experiments and survey methods, enabling the determination of the underlying principles of the judgments and intentions of respondents. Multilevel analysis indicated that intention to engage in the described behaviour was impacted by both the act and the gender of the subject. This study complements previous research on athletes’ moral intentions by the advanced method of factorial survey, while supporting the development of more specific approaches in the promotion of ethical behaviour in sports.
    • Badminton players’ moral intentions: A factorial survey study into personal and contextual determinants

      Castro Sánchez, Adelaida María; De Waegeneer, Els; Constandt, Bram; Van Der Hoeven, Stef; Willem, Annick (Frontiers Media SA, 2019)
      Improving and maintaining high ethical standards among athletes is a major challenge in sports, which requires sufficient knowledge on athletes’ moral intentions. This study advances our knowledge on athletes’ moral intentions by examining the personal and contextual determinants (factors) that influence moral intentions of badminton players. In a factorial survey study, a total of 171 participants were asked to respond to scenarios describing moral dilemmas in the context of badminton. This approach allows combining advantages from both classical experiments and survey methods, enabling the determination of the underlying principles of the judgments and intentions of respondents. Multilevel analysis indicated that intention to engage in the described behaviour was impacted by both the act and the gender of the subject. This study complements previous research on athletes’ moral intentions by the advanced method of factorial survey, while supporting the development of more specific approaches in the promotion of ethical behaviour in sports.
    • Balancing animal welfare and assisted reproduction : ethics of preclinical animal research for testing new reproductive technologies

      Jans, Verna; Dondorp, Wybo; Goossens, Ellen; Mertes, Heidi; Pennings, Guido; de Wert, Guido (Springer Nature, 2018)
    • Balancing animal welfare and assisted reproduction : ethics of preclinical animal research for testing new reproductive technologies

      Jans, Verna; Dondorp, Wybo; Goossens, Ellen; Mertes, HeidiLW010019973963148010016218760000-0003-3029-2158; Pennings, GuidoLW018010017419160000-0003-0754-8055; de Wert, Guido (Springer Nature, 2018)
      In the field of medically assisted reproduction (MAR), there is a growing emphasis on the importance of introducing new assisted reproductive technologies (ARTs) only after thorough preclinical safety research, including the use of animal mod-els. At the same time, there is international support for the three R’s (replace, reduce, refine), and the European Union even aims at the full replacement of animals for research. The apparent tension between these two trends underlines the urgency of an explicit justification of the use of animals for the development and preclinical testing of new ARTs. Considering that the use of animals remains necessary for specific forms of ART research and taking account of different views on the moral importance of helping people to have a genetically related child, we argue that, in principle, the importance of safety research as part of responsible innovation outweighs the limited infringement of animal wellbeing involved in ART research.
    • Balancing animal welfare and assisted reproduction: ethics of preclinical animal research for testing new reproductive technologies

      Jans, Verna; Dondorp, Wybo; Goossens, Ellen; Mertes, Heidi; Pennings, Guido; de Wert, Guido (Springer Nature, 2018)
      In the field of medically assisted reproduction (MAR), there is a growing emphasis on the importance of introducing new assisted reproductive technologies (ARTs) only after thorough preclinical safety research, including the use of animal mod-els. At the same time, there is international support for the three R’s (replace, reduce, refine), and the European Union even aims at the full replacement of animals for research. The apparent tension between these two trends underlines the urgency of an explicit justification of the use of animals for the development and preclinical testing of new ARTs. Considering that the use of animals remains necessary for specific forms of ART research and taking account of different views on the moral importance of helping people to have a genetically related child, we argue that, in principle, the importance of safety research as part of responsible innovation outweighs the limited infringement of animal wellbeing involved in ART research.
    • Balancing animal welfare and assisted reproduction:ethics of preclinical animal research for testing new reproductive technologies

      Jans, Verna; Dondorp, Wybo; Goossens, Ellen; Mertes, Heidi; Pennings, Guido; de Wert, Guido (2018-12)
    • Balancing indigenous principles and institutional research guidelines for informed consent : a case study from the Peruvian Amazon

      Sherman, Mya; Hofmeijer, Irene; Lardeau, Marie-Pierre; Berrang-Ford, Lea; Zavaleta Cortijo, Carol; Ford, James (Taylor & Francis, 2013-08-15)
      Background: Current literature emphasizes the need to implement informed consent according to indigenous principles and worldviews. However, few studies explicitly address how informed consent can be effectively and appropriately obtained in indigenous communities in accordance with research ethics guidelines. Methods: This article uses participatory rural appraisal methods to identify and characterize community preferences for informed consent in two indigenous communities in the Peruvian Amazon, using Canadian federal research regulations and McGill University's Research Ethics Board as a case study to examine where institutional ethics guidelines constrain or support culturally appropriate notions of informed consent. Results: The study emphasizes the importance of tailoring informed consent procedures to community circumstances. Although both communities in this case study are located in the Peruvian Amazon, there were important distinctions between them, such as gender dynamics and social structure, which profoundly affected informed consent procedures. It is also important to consider the balance of collectivism and individualism at a community level in order to determine the role of individual and community consent. Conclusion: Research ethics guidelines generally allow for this contextualized approach. However, regulations still have the potential to constrain indigenous informed consent due to content requirements for informed consent forms, limited flexibility for modifications in the field, and requirements for individual consent.
    • Balancing Justice and Autonomy in Clinical Research With Healthy Volunteers

      Kass, N.E.; Myers, R.; Fuchs, E.J.; Carson, K.A.; Flexner, C. (2016-01-08)
    • Balancing Privacy, Autonomy, and Scientific Needs in Electronic Health Records Research

      Hoffman, Sharona; Podgurski, Andy (Case Western Reserve University School of Law Scholarly Commons, 2012-01-01)
      The ongoing transition from paper medical files to electronic health records will provide unprecedented amounts of data for biomedical research, with the potential to catalyze significant advances in medical knowledge. But this potential can be fully realized only if the data available to researchers is representative of the patient population as a whole. Thus, allowing individual patients to exclude their health information, in keeping with traditional notions of informed consent, may compromise the research enterprise and the medical benefits it produces. This Article analyzes the tension between realizing societal benefits from medical research and granting individual preferences for privacy. It argues for a shift in the conceptual and regulatory frameworks that govern biomedical research. When studies involve electronic record review rather than human experimentation, the traditional, autonomy-dominated model should give way to one that emphasizes the common good. In record-based studies, the limited benefits of individual informed consent come at too high a cost - difficult administrative burdens, significant expenses, and a tendency to create selection biases that distort study outcomes. Other mechanisms can better protect data subjects’ privacy and dignitary interests without compromising research opportunities. In this Article, we formulate a novel, mufti-faceted approach to achieve these ends. This approach recognizes that technical means for achieving identity concealment and information security are necessary but not sufficient to protect patients’ medical privacy and foster public trust while facilitating research. Hence, we call for supplementing such means with (1) an oversight process that is tailored to record-based research and applies even to De-identified patient records, which are currently exempt from scrutiny, and (2) public notice and education about the nature and potential benefits of such research.