• Researchers Get Hippocratic

      Schirber, Michael (2016-01-08)
    • Researchers' Access to Patient Records: An Analysis of the Ethical Problems

      Appelbaum, Paul S.; Roth, Loren H.; Detre, Thomas (2015-05-05)
    • Researchers' preferences and attitudes on ethical aspects of genomics research: a comparative study between the USA and Spain

      Ruiz-Canela, M.; Valle-Mansilla, J.I.; Sulmasy, D.P. (2011-07-12)
      INTRODUCTION: The use of human samples in genomic research has increased ethical debate about informed consent (IC) requirements and the information that subjects should receive regarding the results of the research. However, there are no quantitative data regarding researchers' attitudes about these issues. METHODS: We present the results of a survey of 104 US and 100 Spanish researchers who had published genomic epidemiology studies in 61 journals during 2006. RESULTS: Researchers preferred a broader IC than the IC they had actually obtained in their published papers. US authors were more likely than their Spanish colleagues to support obtaining a broad IC, covering either any future research project or any projects related to a group of diseases (67.6% vs 43%; adjusted OR = 4.84, 95% CI, 2.32 to 10.12). A slight majority of researchers (55.8%) supported informing participants about individual genomic results only if the reliability and clinical validity of the information had been established. Men were more likely than women to believe that patients should be informed of research results even if these conditions were not met (adjusted OR = 2.89, 95% CI = 1.46 to 5.72). CONCLUSIONS: This study provides evidence of a wide range of views among scientists regarding some controversial ethical issues related to genomic research, suggesting the need for more study, debate and education. In the interim, journals might consider including the investigators' policies regarding these ethical issues in the papers they publish in the field of genomic epidemiology.
    • Researchers' preferences and attitudes on ethical aspects of genomics research: a comparative study between the USA and Spain

      Ruiz-Canela, M.; Valle-Mansilla, J.I.; Sulmasy, D.P. (2011-07-12)
      INTRODUCTION: The use of human samples in genomic research has increased ethical debate about informed consent (IC) requirements and the information that subjects should receive regarding the results of the research. However, there are no quantitative data regarding researchers' attitudes about these issues. METHODS: We present the results of a survey of 104 US and 100 Spanish researchers who had published genomic epidemiology studies in 61 journals during 2006. RESULTS: Researchers preferred a broader IC than the IC they had actually obtained in their published papers. US authors were more likely than their Spanish colleagues to support obtaining a broad IC, covering either any future research project or any projects related to a group of diseases (67.6% vs 43%; adjusted OR = 4.84, 95% CI, 2.32 to 10.12). A slight majority of researchers (55.8%) supported informing participants about individual genomic results only if the reliability and clinical validity of the information had been established. Men were more likely than women to believe that patients should be informed of research results even if these conditions were not met (adjusted OR = 2.89, 95% CI = 1.46 to 5.72). CONCLUSIONS: This study provides evidence of a wide range of views among scientists regarding some controversial ethical issues related to genomic research, suggesting the need for more study, debate and education. In the interim, journals might consider including the investigators' policies regarding these ethical issues in the papers they publish in the field of genomic epidemiology.
    • Researchers’ perceptions of ethical challenges in cluster randomized trials: a qualitative analysis

      McRae, Andrew D; Bennett, Carol; Belle Brown, Judith; Weijer, Charles; Boruch, Robert; Brehaut, Jamie; Chaudhry, Shazia; Donner, Allan; Eccles, Martin; Grimshaw, Jeremy; et al. (SelectedWorks, 2013-01-03)
      Background Cluster randomized trials (CRTs) pose ethical challenges for investigators and ethics committees. This study describes the views and experiences of CRT researchers with respect to: (1) ethical challenges in CRTs; (2) the ethics review process for CRTs; and (3) the need for comprehensive ethics guidelines for CRTs. Methods Descriptive qualitative analysis of interviews conducted with a purposive sample of 20 experienced CRT researchers. Results Informants expressed concern over the potential for bias that may result from requirements to obtain informed consent from research participants in CRTs. Informants suggested that the need for informed consent ought to be related to the type of intervention under study in a CRT. Informants rarely expressed concern regarding risks to research participants in CRTs, other than risks to privacy. Important issues identified in the research ethics literature, including fair subject selection and other justice issues, were not mentioned by informants. The ethics review process has had positive and negative impacts on CRT conduct. Informants stated that variability in ethics review between jurisdictions, and increasingly stringent ethics review in recent years, have hampered their ability to conduct CRTs. Many informants said that comprehensive ethics guidelines for CRTs would be helpful to researchers and research ethics committees. Conclusions Informants identified key ethical challenges in the conduct of CRTs, specifically relating to identifying subjects, seeking informed consent, and the use of gatekeepers. These data have since been used to identify topics for in-depth ethical analysis and to guide the development of comprehensive ethics guidelines for CRTs.
    • Researchers’ perceptions of ethical challenges in cluster randomized trials: a qualitative analysis

      McRae Andrew D; Bennett Carol; Brown Judith Belle; Weijer Charles; Boruch Robert; Brehaut Jamie; Chaudhry Shazia; Donner Allan; Eccles Martin; Grimshaw Jeremy; et al. (BioMed Central, 2013-01-01)
      <p>Abstract</p> <p>Background</p> <p>Cluster randomized trials (CRTs) pose ethical challenges for investigators and ethics committees. This study describes the views and experiences of CRT researchers with respect to: (1) ethical challenges in CRTs; (2) the ethics review process for CRTs; and (3) the need for comprehensive ethics guidelines for CRTs.</p> <p>Methods</p> <p>Descriptive qualitative analysis of interviews conducted with a purposive sample of 20 experienced CRT researchers.</p> <p>Results</p> <p>Informants expressed concern over the potential for bias that may result from requirements to obtain informed consent from research participants in CRTs. Informants suggested that the need for informed consent ought to be related to the type of intervention under study in a CRT. Informants rarely expressed concern regarding risks to research participants in CRTs, other than risks to privacy. Important issues identified in the research ethics literature, including fair subject selection and other justice issues, were not mentioned by informants. The ethics review process has had positive and negative impacts on CRT conduct. Informants stated that variability in ethics review between jurisdictions, and increasingly stringent ethics review in recent years, have hampered their ability to conduct CRTs. Many informants said that comprehensive ethics guidelines for CRTs would be helpful to researchers and research ethics committees.</p> <p>Conclusions</p> <p>Informants identified key ethical challenges in the conduct of CRTs, specifically relating to identifying subjects, seeking informed consent, and the use of gatekeepers. These data have since been used to identify topics for in-depth ethical analysis and to guide the development of comprehensive ethics guidelines for CRTs.</p>
    • Researchers’ reflexivity as a responsible attitude 

      Systèmes d'information ; Montpellier Research in Management (MRM) ; Université de Perpignan Via Domitia (UPVD) - Groupe Sup de Co Montpellier (GSCM) - Montpellier Business School - Université Paul Valéry - Montpellier III - Université Montpellier 2 - Sciences et Techniques (UM2) - Université Montpellier 1 (UM1) - Université de Perpignan Via Domitia (UPVD) - Groupe Sup de Co Montpellier (GSCM) - Montpellier Business School - Université Paul Valéry - Montpellier III - Université Montpellier 2 - Sciences et Techniques (UM2) - Université Montpellier 1 (UM1); Centre d'Economie de l'Université Paris Nord (CEPN) ; Université Paris 13 - Université Sorbonne Paris Cité (USPC) - Centre National de la Recherche Scientifique (CNRS); Rodhain, Angélique; Dehling, Aurélie; Silhouette-Dercourt, Virginie (HAL CCSD, 2014-04-10)
      International audience
    • Researching Across Cultures: Issues of Ethics and Power

      Anne Marshall; Suzanne Batten (FQS, 2004-09-01)
      Cultural diversity manifests in all rela­tionships, including research relationships. Aca­dem­ic investigators work across a broad range of cultures that goes beyond ethnicity. What implica­tions are most important for academic researchers to consider when designing and implementing a project? A review of relevant literature suggests that ethical implications begin with the power aspects in the research relationship. Consent, research processes, research design, data owner­ship, and uses of data are also salient issues that arise. URN: urn:nbn:de:0114-fqs0403396