Switch to: References

Add citations

You must login to add citations.
  1. Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada. [REVIEW]Anne Townsend & Susan M. Cox - 2013 - BMC Medical Ethics 14 (1):40.
    Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more (...)
    Direct download (10 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • What does 'respect for persons' require? Attitudes and reported practices of genetics researchers in informing research participants about research.F. A. Miller, R. Z. Hayeems, L. Li & J. P. Bytautas - 2012 - Journal of Medical Ethics 38 (1):48-52.
    Background It has been suggested that researchers are obliged to offer summary findings to research participants to demonstrate respect for persons, and that this may increase public trust in, and awareness of, the research enterprise. Yet little research explores researchers' attitudes and practices regarding the range of initiatives that might serve these ends. Methods Results of an international survey of 785 eligible authors of genetics research studies in autism or cystic fibrosis are reported. Results Of 343 researchers who completed the (...)
    Direct download (6 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • Disclosure of individual research results in clinico-genomic trials: challenges, classification and criteria for decision-making.Regine Kollek & Imme Petersen - 2011 - Journal of Medical Ethics 37 (5):271-275.
    While an ethical obligation to report findings of clinical research to trial participants is increasingly recognised, the academic debate is often vague about what kinds of data should be fed back and how such a process should be organised. In this article, we present a classification of different actors, processes and data involved in the feedback of research results pertaining to an individual. In a second step, we reflect on circumstances requiring further ethical consideration. In regard to a concrete research (...)
    Direct download (6 more)  
     
    Export citation  
     
    Bookmark   10 citations  
  • Eschewing Definitions of the Therapeutic Misconception: A Family Resemblance Analysis.D. S. Goldberg - 2011 - Journal of Medicine and Philosophy 36 (3):296-320.
    Twenty-five years after the term "therapeutic misconception’ (TM) first entered the literature, most commentators agree that it remains widespread. However, the majority of scholarly attention has focused on the reasons why a patient cum human subject might confuse the goals of research with the goals of therapy. Although this paper addresses the social and cultural factors that seem to animate the TM among subjects, it also fills a niche in the literature by examining why investigators too might operate under a (...)
    Direct download (7 more)  
     
    Export citation  
     
    Bookmark  
    		•
  • Ethical issues related to computerised family medical histories in sickle cell disease: Inforare.S. Franrenet, N. Duchange, F. Galacteros, C. Quantin, O. Cohen, R. Nzouakou, S. Sudraud, C. Herve & G. Moutel - 2010 - Journal of Medical Ethics 36 (10):604-607.
    The Inforare project aims to set up a system for the sharing of clinical and familial data, in order to study how genes are related to the severity of sickle cell disease. While the computerisation of clinical records represents a valuable research goal, an ethical framework is necessary to guarantee patients' protection and their rights in this developing field. Issues relating to patient information during the Inforare study were analysed by the steering committee. Several major concerns were discussed by the (...)
    Direct download (6 more)  
     
    Export citation  
     
    Bookmark  
    		•
  • How Do Young People with Cystic Fibrosis Conceptualize the Distinction Between Research and Treatment? A Qualitative Interview Study.Jennifer A. Dobson, Emily Christofides, Melinda Solomon, Valerie Waters & Kieran O’Doherty - 2015 - AJOB Empirical Bioethics 6 (4):1-11.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations