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Bartha Maria Knoppers [20]Bartha M. Knoppers [9]
  1. Bartha Maria Knoppers (forthcoming). Genetic Information: Use and Abuse. Bioethics for Scientists.
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  2. Gail E. Henderson, Susan M. Wolf, Kristine J. Kuczynski, Steven Joffe, Richard R. Sharp, D. Williams Parsons, Bartha M. Knoppers, Joon‐Ho Yu & Paul S. Appelbaum (2014). The Challenge of Informed Consent and Return of Results in Translational Genomics: Empirical Analysis and Recommendations. Journal of Law, Medicine & Ethics 42 (3):344-355.
    As exome and genome sequencing move into clinical application, questions surround how to elicit consent and handle potential return of individual genomic results. This study analyzes nine consent forms used in NIH-funded sequencing studies. Content analysis reveals considerable heterogeneity, including in defining results that may be returned, identifying potential benefits and risks of return, protecting privacy, addressing placement of results in the medical record, and data-sharing. In response to lack of consensus, we offer recommendations.
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  3. Bartha M. Knoppers (2014). Does Policy Grow on Trees? BMC Medical Ethics 15 (1):87.
    Policymaking is both an art and a science. It is a long process of research, debate and consensus . The elaboration of the Framework for Responsible Sharing of Genomic and Health-Related Data serves as an illustration of this process.
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  4. Bartha Maria Knoppers (2014). INTRODUCTION: From the Right to Know to the Right Not to Know. Journal of Law, Medicine & Ethics 42 (1):6-10.
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  5. Adrian Thorogood, Yann Joly, Bartha Maria Knoppers, Tommy Nilsson, Peter Metrakos, Anthoula Lazaris & Ayat Salman (2014). An Implementation Framework for the Feedback of Individual Research Results and Incidental Findings in Research. BMC Medical Ethics 15 (1):88.
    This article outlines procedures for the feedback of individual research data to participants. This feedback framework was developed in the context of a personalized medicine research project in Canada. Researchers in this domain have an ethical obligation to return individual research results and/or material incidental findings that are clinically significant, valid and actionable to participants. Communication of individual research data must proceed in an ethical and efficient manner. Feedback involves three procedural steps: assessing the health relevance of a finding, re-identifying (...)
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  6. Ma’N. H. Zawati, David Parry & Bartha M. Knoppers (2014). The Best Interests of the Child and the Return of Results in Genetic Research: International Comparative Perspectives. BMC Medical Ethics 15 (1):72.
    Paediatric genomic research raises particularly challenging questions on whether and under what circumstances to return research results. In the paediatric context, decision-making is guided by the best interests of the child framework, as enshrined in the 1989 international Convention on the Rights of the Child. According to this Convention, rights and responsibilities are shared between children, parents, researchers, and the state. These "relational" obligations are further complicated in the context of genetic research.
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  7. Edward S. Dove, Denise Avard, Lee Black & Bartha M. Knoppers (2013). Emerging Issues in Paediatric Health Research Consent Forms in Canada: Working Towards Best Practices. [REVIEW] 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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  8. Bartha M. Knoppers, Edward S. Dove & Ma'N. H. Zawati (2013). Demystifying Biobanks. Hastings Center Report 43 (5):4-5.
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  9. Yann Joly, Clarissa Allen & Bartha M. Knoppers (2012). Currents in Contemporary Bioethics. Journal of Law, Medicine & Ethics 40 (1):143-146.
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  10. Vural Ozdemir, Yann Joly, Edward S. Dove, Aspasia Karalis, Denise Avard & Bartha M. Knoppers (2012). Are We Asking the Right Ethics Questions on Drug Shortages? Suggestions for a Global and Anticipatory Ethics Framework. 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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  11. Bartha M. Knoppers, Yann Joly & Vural Ozdemir (2011). ACCE, Pharmacogenomics, and Stopping Clinical Trials: Time to Extend the CONSORT Statement? American Journal of Bioethics 11 (3):11-13.
    (2011). ACCE, Pharmacogenomics, and Stopping Clinical Trials: Time to Extend the CONSORT Statement? The American Journal of Bioethics: Vol. 11, No. 3, pp. 11-13.
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  12. Bartha Maria Knoppers & Amy Dam (2011). Return of Results: Towards a Lexicon? Journal of Law, Medicine & Ethics 39 (4):577-582.
    Currently, the return of results in the domain of biobanking constitutes an ethical and legal quagmire, whether it involves population or specific clinical research studies. In light of the fact that population biobanks are often not seen as distinct from those biobanks created for disease research, as well as the uncertainty as to what “return of results” means concretely, this lexicon attempts to demystify the terminology. The terms — results, return, clinical significance, and utility — are discussed. Through an analysis (...)
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  13. Bartha Maria Knoppers & Emmanuelle Lévesque (2011). INTRODUCTION: Return of Research Results: How Should Research Results Be Handled? Journal of Law, Medicine & Ethics 39 (4):574-576.
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  14. Bartha Maria Knoppers, Emily Kirby & Rosario Isasi (2010). Genetics and Stem Cell Research : Models of International Policy-Making. In John Elliott, W. Calvin Ho & Sylvia S. N. Lim (eds.), Bioethics in Singapore: The Ethical Microcosm. World Scientific
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  15. Vural Ozdemir & Bartha Maria Knoppers (2010). One Size Does Not Fit All: Toward “Upstream Ethics”? American Journal of Bioethics 10 (6):42-44.
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  16. Bartha Maria Knoppers & Claude Laberge (2009). Return of “Accurate” and “Actionable” Results: Yes! American Journal of Bioethics 9 (6):107-109.
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  17. Bartha Maria Knoppers & Madelaine Saginur (2008). Bio-Banking. In Peter A. Singer & A. M. Viens (eds.), The Cambridge Textbook of Bioethics. Cambridge University Press
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  18. Bartha Maria Knoppers, Madelaine Saginur & Howard Cash (2006). Ethical Issues in Secondary Uses of Human Biological Materials From Mass Disasters. Journal of Law, Medicine & Ethics 34 (2):352-365.
    This paper addresses the ethical issues of secondary uses of samples collected for identification purposes following mass disasters. It studies norms governing secondary use of samples , ultimately concluding that limited secondary research uses of these samples should be permissible.
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  19. Ruth Chadwick & Bartha Maria Knoppers, Human Genetic Research: Emerging Trends in Ethics.
    Genetic research has moved from Mendelian genetics to sequence maps to the study of natural human genetic variation at the level of the genome. This past decade of discovery has been accompanied by a shift in emphasis towards the ethical principles of reciprocity, mutuality, solidarity, citizenry and universality.
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  20. Bartha Maria Knoppers (2005). Biobanking: International Norms. Journal of Law, Medicine & Ethics 33 (1):7-14.
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  21. Bartha Maria Knoppers (2005). Neuroethics, New Ethics? American Journal of Bioethics 5 (2):33.
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  22. Mark A. Rothstein & Bartha Maria Knoppers (2005). Introduction. Journal of Law, Medicine & Ethics 33 (1):6-6.
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  23. Rosario M. Isasi, Bartha M. Knoppers, Peter A. Singer & Abdallah S. Daar (2004). Legal and Ethical Approaches to Stem Cell and Cloning Research: A Comparative Analysis of Policies in Latin America, Asia, and Africa. Journal of Law, Medicine & Ethics 32 (4):626-640.
  24. Linda Kharaboyan, Denise Avard & Bartha Maria Knoppers (2004). Storing Newborn Blood Spots: Modern Controversies. Journal of Law, Medicine & Ethics 32 (4):741-748.
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  25. Bartha Maria Knoppers (ed.) (2003). Populations and Genetics: Legal and Socio-Ethical Perspectives. Martinus Nijhoff.
    This book of selected papers covers population research and banking as well as accompanying confidentiality, and governance concerns.
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  26. Dorothy Wertz & Bartha Maria Knoppers (2003). The HUGO Ethics Committee: Six Innovative Statements. New Review of Bioethics 1 (1):27-40.
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  27. Bartha Maria Knoppers, Timothy Caulfield & T. Douglas Kinsella (1998). Book Reviews-Legal Rights and Human Genetic Material. Bioethics 12 (4):343.
     
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  28. Claude M. Laberge & Bartha Maria Knoppers (1992). Rationale for an Integrated Approach to Genetic Epidemiology. Bioethics 6 (4):317–330.
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  29. Claud M. Laberge & Bartha Maria Knoppers (1990). Newborn Genetic Screening: Ethical and Social Considerations for the Nineties. Journal International de Bioethique= International Journal of Bioethics 2 (1):5-12.
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