5 found
Order:
  1.  55
    Broad Consent for Research With Biological Samples: Workshop Conclusions.Christine Grady, Lisa Eckstein, Ben Berkman, Dan Brock, Robert Cook-Deegan, Stephanie M. Fullerton, Hank Greely, Mats G. Hansson, Sara Hull, Scott Kim, Bernie Lo, Rebecca Pentz, Laura Rodriguez, Carol Weil, Benjamin S. Wilfond & David Wendler - 2015 - American Journal of Bioethics 15 (9):34-42.
    Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   59 citations  
  2.  21
    A Framework for Analyzing the Ethics of Disclosing Genetic Research Findings.Lisa Eckstein, Jeremy R. Garrett & Benjamin E. Berkman - 2014 - Journal of Law, Medicine and Ethics 42 (2):190-207.
    Over the past decade, there has been an extensive debate about whether researchers have an obligation to disclose genetic research findings, including primary and secondary findings. There appears to be an emerging (but disputed) view that researchers have some obligation to disclose some genetic findings to some research participants. The contours of this obligation, however, remain unclear. -/- As this paper will explore, much of this confusion is definitional or conceptual in nature. The extent of a researcher’s obligation to return (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   12 citations  
  3.  12
    Moving Forward on Consent Practices in Australia.Lisa Eckstein & Rebekah McWhirter - 2018 - Journal of Bioethical Inquiry 15 (2):243-257.
    Allowing persons to make an informed choice about their participation in research is a pre-eminent ethical and legal requirement. Almost universally, this requirement has been addressed through the provision of written patient information sheets and consent forms. Researchers and others have raised concerns about the extent to which such forms—particularly given their frequent lengthiness and complexity—provide participants with the tools and knowledge necessary for autonomous decision-making. Concerns are especially pronounced for certain participant groups, such as persons with low literacy and (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  4.  11
    Moving Forward on Consent Practices in Australia.Rebekah E. McWhirter & Lisa Eckstein - 2018 - Journal of Bioethical Inquiry 15 (2):243-257.
    Allowing persons to make an informed choice about their participation in research is a pre-eminent ethical and legal requirement. Almost universally, this requirement has been addressed through the provision of written patient information sheets and consent forms. Researchers and others have raised concerns about the extent to which such forms—particularly given their frequent lengthiness and complexity—provide participants with the tools and knowledge necessary for autonomous decision-making. Concerns are especially pronounced for certain participant groups, such as persons with low literacy and (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  5.  8
    Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective.Lisa Eckstein & Margaret Otlowski - 2018 - Journal of Bioethical Inquiry 15 (3):403-415.
    In Australia, along with many other countries, limited guidance or other support strategies are currently available to researchers, institutional research ethics committees, and others responsible for making decisions about whether to return genomic findings with potential value to participants or their blood relatives. This lack of guidance results in onerous decision-making burdens—traversing technical, interpretative, and ethical dimensions—as well as uncertainty and inconsistencies for research participants. This article draws on a recent targeted consultation conducted by the Australian National Health and Medical (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation