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  1.  39
    Pediatric Research and the Return of Individual Research Results.Denise Avard, Karine Sénécal, Parvaz Madadi & Daniel Sinnett - 2011 - Journal of Law, Medicine and Ethics 39 (4):593-604.
    The return of individual research results to participants raises many socio-ethical issues and is even more challenging when the participant is a child. The objective of this article is to present an overview of the few ethical guidelines and relevant literature addressing the return of individual results in pediatric research. By reviewing policies and the literature, we present some overarching considerations and delineate contextual issues in order to propose a framework.
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  2.  30
    Returning Incidental Findings From Genetic Research to Children: Views of Parents of Children Affected by Rare Diseases.Erika Kleiderman, Bartha Maria Knoppers, Conrad V. Fernandez, Kym M. Boycott, Gail Ouellette, Durhane Wong-Rieger, Shelin Adam, Julie Richer & Denise Avard - 2014 - Journal of Medical Ethics 40 (10):691-696.
  3.  12
    Pediatric Research and the Return of Individual Research Results.Denise Avard, Karine Sénécal, Parvaz Madadi & Daniel Sinnett - 2011 - Journal of Law, Medicine and Ethics 39 (4):593-604.
    As a matter of respect for the person, it is considered an ethical duty to offer to return research results to participants where appropriate. Nevertheless, the return of individual research results to participants raises many socio-ethical issues and greater challenges when the participant is a child. This discrepancy arises partly because the return of individual pediatric research results entails a tripartite relationship between researcher, child, and parent and is embroiled in numerous considerations.Extra caution is required in the pediatric research context (...)
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  4.  48
    Emerging Issues in Paediatric Health Research Consent Forms in Canada: Working Towards Best Practices. [REVIEW]Edward S. Dove, Denise Avard, Lee Black & Bartha M. Knoppers - 2013 - BMC Medical Ethics 14 (1):1-10.
    BackgroundObtaining a research participant’s voluntary and informed consent is the bedrock of sound ethics practice. Greater inclusion of children in research has led to questions about how paediatric consent operates in practice to accord with current and emerging legal and socio-ethical issues, norms, and requirements.MethodsEmploying a qualitative thematic content analysis, we examined paediatric consent forms from major academic centres and public organisations across Canada dated from 2008–2011, which were purposively selected to reflect different types of research ethics boards, participants, and (...)
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  5.  20
    Defining the Scope of Public Engagement: Examining the “Right Not to Know” in Public Health Genomics.Clarissa Allen, Karine Sénécal & Denise Avard - 2014 - Journal of Law, Medicine and Ethics 42 (1):11-18.
    In this article, we explore the concept of a “right not to know” on a population rather than individual level. We argue that a population level “right not to know” is a useful concept for helping to define the appropriate boundaries of public engagement initiatives in the emerging public health genomics context.
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  6.  11
    Defining the Scope of Public Engagement: Examining the “Right Not to Know” in Public Health Genomics.Clarissa Allen, Karine Sénécal & Denise Avard - 2014 - Journal of Law, Medicine and Ethics 42 (1):11-18.
    While the realm of bioethics has traditionally focused on the rights of the individual and held autonomy as a defining principle, public health ethics has at its core a commitment to the promotion of the common good. While these two domains may at times conflict, concepts arising in one may also be informative for concepts arising in the other. One example of this is the concept of a “right not to know.” Recent debate suggests that just as there is a (...)
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  7. Recruiting Terminally Ill Patients Into Non-Therapeutic Oncology Studies: Views of Health Professionals. [REVIEW]Erika Kleiderman, Denise Avard, Lee Black, Zuanel Diaz, Caroline Rousseau & Bartha Knoppers - 2012 - BMC Medical Ethics 13 (1):33-.
    Background Non-therapeutic trials in which terminally ill cancer patients are asked to undergo procedures such as biopsies or venipunctures for research purposes, have become increasingly important to learn more about how cancer cells work and to realize the full potential of clinical research. Considering that implementing non-therapeutic studies is not likely to result in direct benefits for the patient, some authors are concerned that involving patients in such research may be exploitive of vulnerable patients and should not occur at all, (...)
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  8.  18
    Are We Asking the Right Ethics Questions on Drug Shortages? Suggestions for a Global and Anticipatory Ethics Framework.Vural Ozdemir, Yann Joly, Edward S. Dove, Aspasia Karalis, Denise Avard & Bartha M. Knoppers - 2012 - American Journal of Bioethics 12 (1):13 - 15.
    The American Journal of Bioethics, Volume 12, Issue 1, Page 13-15, January 2012.
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  9.  19
    Storing Newborn Blood Spots: Modern Controversies.Linda Kharaboyan, Denise Avard & Bartha Maria Knoppers - 2004 - Journal of Law, Medicine and Ethics 32 (4):741-748.
    Though in existence for over thirty-five years, due to the increasing panoply of possible tests. Newborn screening programs are drawing public attention. Many jurisdictions have mandatory newborn screening programs for treatable disorders. Disorders are detected through tests on blood spots drawn from a newborn’s heel soon after birth and verified through a diagnostic test with follow-up. Unbeknownst to most parents, these blood spot cards are also stored thereafter. Indeed, while dried blood spots are primarily used for screening for health problems, (...)
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  10.  8
    Variability in the Storage and Use of Newborn Dried Bloodspots in Canada: Is It Time for National Standards?Denise Avard, Hilary Vallance, Cheryl Greenberg, Claude Laberge & Linda Kharaboyan - 2006 - Genomics, Society and Policy 2 (3):80-95.
    Storage and secondary use of bloodspots collected for newborn screening raises controversies because of the particularly sensitive nature of the information that can be derived from them and the lack of national standards and consistent provincial policies that can serve to guide storage facilities. This report, derived through a review of Canadian and provincial policy statements, a survey of provincial newborn screening laboratory directors and program directors, as well as through a consultative workshop, illustrates the social, ethical and legal issues (...)
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  11.  6
    Storing Newborn Blood Spots: Modern Controversies.Linda Kharaboyan, Denise Avard & Bartha Maria Knoppers - 2004 - Journal of Law, Medicine and Ethics 32 (4):741-748.
    Though in existence for over thirty-five years, due to the increasing panoply of possible tests. Newborn screening programs are drawing public attention. Many jurisdictions have mandatory newborn screening programs for treatable disorders. Disorders are detected through tests on blood spots drawn from a newborn’s heel soon after birth and verified through a diagnostic test with follow-up. Unbeknownst to most parents, these blood spot cards are also stored thereafter. Indeed, while dried blood spots are primarily used for screening for health problems, (...)
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