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    Enhancing the ethical conduct of genetic research: investigating views of parents on including their healthy children in a study on mild hearing loss

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    Author
    Gillam, L; Poulakis, Z; Tobin, S; Wake, M
    Date
    2006-09-01
    Source Title
    JOURNAL OF MEDICAL ETHICS
    Publisher
    B M J PUBLISHING GROUP
    University of Melbourne Author/s
    Gillam, Lynn; Poulakis, Zeffie; Wake, Melissa
    Affiliation
    Paediatrics Royal Children'S Hospital
    Metadata
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    Document Type
    Journal Article
    Citations
    Gillam, L., Poulakis, Z., Tobin, S. & Wake, M. (2006). Enhancing the ethical conduct of genetic research: investigating views of parents on including their healthy children in a study on mild hearing loss. JOURNAL OF MEDICAL ETHICS, 32 (9), pp.537-541. https://doi.org/10.1136/jme.2005.013201.
    Access Status
    Access this item via the Open Access location
    URI
    http://hdl.handle.net/11343/25528
    DOI
    10.1136/jme.2005.013201
    Open Access at PMC
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563404
    Description

    C1 - Journal Articles Refereed

    Abstract
    Clinical genetic research is often regarded as more ethically problematic than other forms of research, and in some countries is subject to specific regulation, requiring researchers to follow specialised guidelines. In this paper, an approach to enhancing the ethical conduct of genetic research is proposed, which is believed to be more effective than simply attempting to follow general guidelines. The potential concerns, likely areas of misunderstanding and negative reactions of the participant group are systematically investigated before starting a study on genetics. This would constitute, in effect, an ethical pilot study, similar to a feasibility pilot study to test equipment, procedures and logistics. The findings of the ethical pilot study would be used to help in designing ethically important aspects of research protocol, such as recruitment procedures, written and other information for potential participants, informed consent processes and reporting of results including ambiguous or uncertain results.
    Keywords
    Public Health and Health Services not elsewhere classified; Public Health not elsewhere classified

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