1.  25
    Dynamic Consent: A Potential Solution to Some of the Challenges of Modern Biomedical Research.Isabelle Budin-Ljøsne, Harriet J. A. Teare, Jane Kaye, Stephan Beck, Heidi Beate Bentzen, Luciana Caenazzo, Clive Collett, Flavio D’Abramo, Heike Felzmann, Teresa Finlay, Muhammad Kassim Javaid, Erica Jones, Višnja Katić, Amy Simpson & Deborah Mascalzoni - 2017 - BMC Medical Ethics 18 (1):4.
    BackgroundInnovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment.MethodsAn interdisciplinary workshop jointly organised by the University of Oxford (...)
    Direct download (3 more)  
    Export citation  
    Bookmark   16 citations  
  2.  20
    Patient and interest organizations’ views on personalized medicine: a qualitative study.Isabelle Budin-Ljøsne & Jennifer R. Harris - 2016 - BMC Medical Ethics 17 (1):1.
    Personalized medicine aims to tailor disease prevention, diagnosis, and treatment to individuals on the basis of their genes, lifestyle and environments. Patient and interest organizations may potentially play an important role in the realization of PM. This paper investigates the views and perspectives on PM of a variety of PIOs. Semi-structured telephone interviews were conducted among leading representatives of 13 PIOs located in Europe and North-America. The data collected were analysed using a conventional content analysis approach. The PIO representatives supported (...)
    Direct download (8 more)  
    Export citation  
    Bookmark   3 citations  
  3.  61
    A Review of Ethical Frameworks for the Disclosure of Individual Research Results in Population-Based Genetic and Genomic Research. [REVIEW]Isabelle Budin-Ljøsne - 2012 - Research Ethics 8 (1):25-42.
    Individual research results from population-based genetic and genomic research are traditionally not disclosed to research participants. Current practices of non-disclosure are, however, being challenged by an increasing number of scientists, ethicists and policy-makers who make arguments in favour of disclosing at least individual results of potential health or lifestyle significance to research participants. Simultaneously, research participants are expressing greater interest in accessing their results. This article first provides an overview of main arguments for and against the disclosure of individual research (...)
    Direct download (8 more)  
    Export citation