Switch to: Citations

Add references

You must login to add references.
  1. Buckets of Resistance: Standards and the Effectiveness of Citizen Science.Gwen Ottinger - 2010 - Science, Technology, and Human Values 35 (2):244-270.
    In light of arguments that citizen science has the potential to make environmental knowledge and policy more robust and democratic, this article inquires into the factors that shape the ability of citizen science to actually influence scientists and decision makers. Using the case of community-based air toxics monitoring with ‘‘buckets,’’ it argues that citizen science’s effectiveness is significantly influenced by standards and standardized practices. It demonstrates that, on one hand, standards serve a boundary-bridging function that affords bucket monitoring data a (...)
    Download  
     
    Export citation  
     
    Bookmark   23 citations  
  • “You hoped we would sleep walk into accepting the collection of our data”: controversies surrounding the UK care.data scheme and their wider relevance for biomedical research.Sigrid Sterckx, Vojin Rakic, Julian Cockbain & Pascal Borry - 2016 - Medicine, Health Care and Philosophy 19 (2):177-190.
    An ‘Information Centre’ has recently been established by law which has the power to collect, collate and provide access to the medical information forall patients treated by the National Health Service in England, whether in hospitals or by General Practitioners. This so-called ‘care.data’ scheme has given rise to major and ongoing controversies. We will sketch the background of the scheme and look at the responses it has elicited from citizens and medical professionals. In Autumn 2013, NHS England set up a (...)
    Download  
     
    Export citation  
     
    Bookmark   16 citations  
  • The social licence for research: why care.data ran into trouble.Pam Carter, Graeme T. Laurie & Mary Dixon-Woods - 2015 - Journal of Medical Ethics 41 (5):404-409.
    Download  
     
    Export citation  
     
    Bookmark   50 citations  
  • Scientific research is a moral duty.J. Harris - 2005 - Journal of Medical Ethics 31 (4):242-248.
    Biomedical research is so important that there is a positive moral obligation to pursue it and to participate in itScience is under attack. In Europe, America, and Australasia in particular, scientists are objects of suspicion and are on the defensive.i“Frankenstein science”5–8 is a phrase never far from the lips of those who take exception to some aspect of science or indeed some supposed abuse by scientists. We should not, however, forget the powerful obligation there is to undertake, support, and participate (...)
    Download  
     
    Export citation  
     
    Bookmark   116 citations  
  • Research led by participants: a new social contract for a new kind of research.Effy Vayena, Roger Brownsword, Sarah Jane Edwards, Bastian Greshake, Jeffrey P. Kahn, Navjoyt Ladher, Jonathan Montgomery, Daniel O'Connor, Onora O'Neill, Martin P. Richards, Annette Rid, Mark Sheehan, Paul Wicks & John Tasioulas - 2016 - Journal of Medical Ethics 42 (4):216-219.
    Download  
     
    Export citation  
     
    Bookmark   12 citations  
  • From “Personalized” to “Precision” Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine.Eric Juengst, Michelle L. McGowan, Jennifer R. Fishman & Richard A. Settersten - 2016 - Hastings Center Report 46 (5):21-33.
    Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this (...)
    Download  
     
    Export citation  
     
    Bookmark   25 citations  
  • Governing the Postmortem Procurement of Human Body Material for Research.Kristof Van Assche, Laura Capitaine, Guido Pennings & Sigrid Sterckx - 2015 - Kennedy Institute of Ethics Journal 25 (1):67-88.
    Human body material removed post mortem is a particularly valuable resource for research. Considering the efforts that are currently being made to study the biochemical processes and possible genetic causes that underlie cancer and cardiovascular and neurodegenerative diseases, it is likely that this type of research will continue to gain in importance. However, post mortem procurement of human body material for research raises specific ethical concerns, more in particular with regard to the consent of the research participant. In this paper, (...)
    Download  
     
    Export citation  
     
    Bookmark   5 citations  
  • Justice, the basic social contract and health care.Robert M. Veatch - forthcoming - Contemporary Issues in Bioethics.
    Download  
     
    Export citation  
     
    Bookmark   6 citations  
  • Big data, open science and the brain: lessons learned from genomics.Suparna Choudhury, Jennifer R. Fishman, Michelle L. McGowan & Eric T. Juengst - 2014 - Frontiers in Human Neuroscience 8.
    Download  
     
    Export citation  
     
    Bookmark   15 citations