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  1. Article: Currents in contemporary ethics. The tuberculosis scare in retrospect.

    Joly, Yann / Nycum, Gillian

    The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics

    2007  Volume 35, Issue 4, Page(s) 734–738

    MeSH term(s) Extensively Drug-Resistant Tuberculosis/prevention & control ; Humans ; Male ; Public Health/ethics ; Public Health/legislation & jurisprudence ; Public Health/standards ; United States
    Language English
    Publishing date 2007
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1168812-9
    ISSN 1748-720X ; 1073-1105 ; 0277-8459
    ISSN (online) 1748-720X
    ISSN 1073-1105 ; 0277-8459
    DOI 10.1111/j.1748-720X.2007.00195.x
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article: The harm-benefit tradeoff in "bad deal" trials.

    Nycum, Gillian / Reid, Lynette

    Kennedy Institute of Ethics journal

    2007  Volume 17, Issue 4, Page(s) 321–350

    Abstract: This paper examines the nature of the harm-benefit tradeoff in early clinical research for interventions that involve remote possibility of direct benefit and likelihood of direct harms to research participants with fatal prognoses, by drawing on the ... ...

    Abstract This paper examines the nature of the harm-benefit tradeoff in early clinical research for interventions that involve remote possibility of direct benefit and likelihood of direct harms to research participants with fatal prognoses, by drawing on the example of gene transfer trials for glioblastoma multiforme. We argue that the appeal made by the component approach to clinical equipoise fails to account fully for the nature of the harm-benefit tradeoff-individual harm for social benefit-that would be required to justify such research. An analysis of what we label "collateral affective benefits," such as the experience of hope or exercise of altruism, shows that the existence of these motivations reinforces rather than mitigates the necessity of justification by reference to social benefit. Evaluations of social benefit must be taken seriously in the research ethics review process to avoid the exploitation of research participants' motivations of hope or altruism and to avoid the possibility of inadvertent exploitation of high-risk research participants and the harms that would associate with such exploitation.
    MeSH term(s) Altruism ; Clinical Trials as Topic/ethics ; Cost-Benefit Analysis ; Emotions ; Ethics, Research ; Genetic Therapy/ethics ; Glioblastoma/genetics ; Glioblastoma/therapy ; Humans ; Research Subjects ; Therapeutic Human Experimentation/ethics ; Uncertainty
    Language English
    Publishing date 2007-12-31
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1083645-7
    ISSN 1054-6863
    ISSN 1054-6863
    DOI 10.1353/ken.2008.0004
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article: Harmonizing the international regulation of embryonic stem cell research: possibilities, promises and potential pitfalls.

    Campbell, Angela / Nycum, Gillian

    Medical law international

    2005  Volume 7, Issue 2, Page(s) 113–148

    Abstract: Despite near unanimous global opposition to human reproductive cloning, the United Nations has been unable to reach a consensus as to how cloning practices should be regulated at the international level. As a result, the U.N. objective of establishing ... ...

    Abstract Despite near unanimous global opposition to human reproductive cloning, the United Nations has been unable to reach a consensus as to how cloning practices should be regulated at the international level. As a result, the U.N. objective of establishing binding international regulations governing cloning and stem cell research has yet to be achieved. Given the lack of consensus that exists within the global community on this topic, it seems that any attempt to harmonize the international regulation of cloning and stem cell science will face important obstacles. This paper seeks to illuminate the particular challenges to harmonizing international laws and policies related to stem cell research and human cloning, and to investigate potential methods for overcoming these challenges. By drawing on two other areas in which regulatory harmonization has been attempted, namely: environmental and human safety aspects of international trade, and pharmaceutical research and development, we study approaches to global regulatory harmonization. We conclude that while the challenges to harmonization are diverse and important, so too are the benefits of establishing uniformity in approaches to stem cell research worldwide. This paper proposes a model for harmonizing the regulation of stem cell research that focuses on broader norms and principles rather than specific rules. It further recommends that such harmonization should occur through a process initiated and developed by an independent international agency marked by diversity, both in terms of the cultural identities and perspectives represented, and the interdisciplinary expertise of its members.
    MeSH term(s) Cloning, Organism/legislation & jurisprudence ; Cloning, Organism/standards ; Consensus ; Cultural Diversity ; Drug Industry ; Embryo Research/legislation & jurisprudence ; Embryo, Mammalian/cytology ; Guidelines as Topic ; Humans ; International Cooperation/legislation & jurisprudence ; Legislation as Topic ; Policy Making ; Social Control, Formal ; Stem Cells ; United Nations
    Language English
    Publishing date 2005
    Publishing country England
    Document type Journal Article
    ZDB-ID 1281332-1
    ISSN 2047-9441 ; 0968-5332
    ISSN (online) 2047-9441
    ISSN 0968-5332
    DOI 10.1177/096853320500700202
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information.

    Nycum, Gillian / Avard, Denise / Knoppers, Bartha M

    European journal of human genetics : EJHG

    2009  Volume 17, Issue 7, Page(s) 872–880

    Abstract: What factors influence intrafamilial communication of hereditary breast and ovarian cancer (HBOC) genetic risk information? Such information can have health implications for individuals who undergo genetic testing, but it can also have implications for ... ...

    Abstract What factors influence intrafamilial communication of hereditary breast and ovarian cancer (HBOC) genetic risk information? Such information can have health implications for individuals who undergo genetic testing, but it can also have implications for their blood relatives. This literature review adopts an ecological model to summarize factors at the individual, familial, and community levels, as well as cross cutting factors relating to the complexity of HBOC genetic information and responsibilities that this information can give rise to. These factors are complex and may result in conflicting senses of responsibility. Faced with the task of communicating HBOC genetic information, the response may be to attempt to balance the potential negative impact of the information on the well-being of the informee (eg, can s/he handle this information?) against the potential health benefit that the knowledge could result in. This balancing represents an effort to reconcile conflicting approaches to protecting family members, and is a moral dilemma. This review sheds light on the factors that contribute to resolve this dilemma.
    MeSH term(s) Breast Neoplasms/genetics ; Communication ; Decision Making ; Family ; Female ; Genetic Predisposition to Disease ; Humans ; Moral Obligations ; Ovarian Neoplasms/genetics ; Risk Assessment
    Language English
    Publishing date 2009-03-25
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Review
    ZDB-ID 1141470-4
    ISSN 1476-5438 ; 1018-4813
    ISSN (online) 1476-5438
    ISSN 1018-4813
    DOI 10.1038/ejhg.2009.33
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Should physicians warn patients' relatives of genetic risks?

    Lacroix, Mireille / Nycum, Gillian / Godard, Béatrice / Knoppers, Bartha Maria

    CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne

    2008  Volume 178, Issue 5, Page(s) 593–595

    MeSH term(s) Breast Neoplasms/genetics ; Canada ; Duty to Warn/ethics ; Duty to Warn/psychology ; Ethics, Clinical ; Female ; Humans ; Middle Aged ; Mother-Child Relations ; Physician-Patient Relations/ethics
    Language English
    Publishing date 2008-02-25
    Publishing country Canada
    Document type Case Reports ; Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 215506-0
    ISSN 1488-2329 ; 0008-4409 ; 0820-3946
    ISSN (online) 1488-2329
    ISSN 0008-4409 ; 0820-3946
    DOI 10.1503/cmaj.070956
    Database MEDical Literature Analysis and Retrieval System OnLINE

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