1.  36
    Introduction: Sharing Data in a Medical Information Commons.Amy L. McGuire, Mary A. Majumder, Angela G. Villanueva, Jessica Bardill, Juli M. Bollinger, Eric Boerwinkle, Tania Bubela, Patricia A. Deverka, Barbara J. Evans, Nanibaa' A. Garrison, David Glazer, Melissa M. Goldstein, Henry T. Greely, Scott D. Kahn, Bartha M. Knoppers, Barbara A. Koenig, J. Mark Lambright, John E. Mattison, Christopher O'Donnell, Arti K. Rai, Laura L. Rodriguez, Tania Simoncelli, Sharon F. Terry, Adrian M. Thorogood, Michael S. Watson, John T. Wilbanks & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):12-20.
    Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.
    Direct download (5 more)  
    Export citation  
    Bookmark   4 citations  
  2.  11
    Medical Information Commons to Support Learning Healthcare Systems: Examples From Canada.Tania Bubela, Shelagh K. Genuis, Naveed Z. Janjua, Mel Krajden, Nicole Mittmann, Katerina Podolak & Lawrence W. Svenson - 2019 - Journal of Law, Medicine and Ethics 47 (1):97-105.
    We explore how principles predicting the success of a medical information commons advantaged or disadvantaged three MIC initiatives in three Canadian provinces. Our MIC case examples demonstrate that practices and policies to promote access to and use of health information can help improve individual healthcare and inform a learning health system. MICs were constrained by heterogenous health information protection laws across jurisdictions and risk-averse institutional cultures. A networked approach to MICs would unlock even more potential for national and international data (...)
    Direct download (3 more)  
    Export citation  
    Bookmark   2 citations  
  3.  38
    Why a Criminal Ban? Analyzing the Arguments Against Somatic Cell Nuclear Transfer in the Canadian Parliamentary Debate.Timothy Caulfield & Tania Bubela - 2007 - American Journal of Bioethics 7 (2):51 – 61.
    Somatic cell nuclear transfer (SCNT) remains a controversial technique, one that has elicited a variety of regulatory responses throughout the world. On March 29, 2005, Canada's Assisted Human Reproduction Act came into force. This law prohibits a number of research activities, including SCNT. Given the pluralistic nature of Canadian society, the creation of this law stands as an interesting case study of the policy-making process and how and why a liberal democracy ends up making the relatively rare decision to use (...)
    Direct download (2 more)  
    Export citation  
    Bookmark   8 citations  
  4.  16
    Ocular Gene Transfer in the Spotlight: Implications of Newspaper Content for Clinical Communications.Shelly Benjaminy & Tania Bubela - 2014 - BMC Medical Ethics 15 (1):58.
    Ocular gene transfer clinical trials are raising hopes for blindness treatments and attracting media attention. News media provide an accessible health information source for patients and the public, but are often criticized for overemphasizing benefits and underplaying risks of novel biomedical interventions. Overly optimistic portrayals of unproven interventions may influence public and patient expectations; the latter may cause patients to downplay risks and over-emphasize benefits, with implications for informed consent for clinical trials. We analyze the news media communications landscape about (...)
    Direct download (6 more)  
    Export citation  
  5.  72
    Faisons mieux les choses : représentation publique de la science sur la COVID-19.Tania Bubela, Timothy Caulfield, Jonathan Kimmelman & Vardit Ravitsky - 2020 - Ottawa, Canada:
    Les recherches scientifiques sur la COVID-19 sont à la fois menées et diffusées à une cadence effrénée. Bien qu’il soit inspirant de voir la communauté de la recherche répondre avec autant de vigueur à la crise causée par la pandémie, toute cette activité a par ailleurs engendré un chaos de mauvaises données, de résultats contradictoires et de manchettes exagérées. Alors que la polarisation, la déformation et la médiatisation des résultats scientifiques s’intensifient chaque jour, les inquiétudes se font de plus en (...)
    Direct download  
    Export citation  
  6. Let’s Do Better: Public Representations of COVID-19 Science.Tania Bubela, Timothy Caulfield, Jonathan Kimmelman & Vardit Ravitsky - 2020 - Ottawa, Canada:
    COVID science is being both done and circulated at a furious pace. While it is inspiring to see the research community responding so vigorously to the pandemic crisis, all this activity has also created a churning sea of bad data, conflicting results, and exaggerated headlines. With representations of science becoming increasingly polarized, twisted and hyped, there is growing concern that the relevant science is being represented to the public in a manner that may cause confusion, inappropriate expectations, and the erosion (...)
    Direct download  
    Export citation