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Bartha Maria Knoppers [30]Bartha M. Knoppers [13]
  1.  34
    Human Genetic Research: Emerging Trends in Ethics.Ruth Chadwick & Bartha Maria Knoppers - unknown
    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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  2.  2
    Return of “Accurate” and “Actionable” Results: Yes!Bartha Maria Knoppers & Claude Laberge - 2009 - American Journal of Bioethics 9 (6):107-109.
  3.  3
    Return of Results: Towards a Lexicon?Bartha Maria Knoppers & Amy Dam - 2011 - 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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  4.  8
    One Size Does Not Fit All: Toward “Upstream Ethics”?Vural Ozdemir & Bartha Maria Knoppers - 2010 - American Journal of Bioethics 10 (6):42-44.
  5.  4
    Biobanking: International Norms.Bartha Maria Knoppers - 2005 - Journal of Law, Medicine & Ethics 33 (1):7-14.
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  6.  10
    Legal and Ethical Approaches to Stem Cell and Cloning Research: A Comparative Analysis of Policies in Latin America, Asia, and Africa.Rosario M. Isasi, Bartha M. Knoppers, Peter A. Singer & Abdallah S. Daar - 2004 - Journal of Law, Medicine & Ethics 32 (4):626-640.
  7.  2
    Legal and Ethical Approaches to Stem Cell and Cloning Research: A Comparative Analysis of Policies in Latin America, Asia, and Africa.Rosario M. Isasi, Bartha M. Knoppers, Peter A. Singer & Abdallah S. Daar - 2004 - Journal of Law, Medicine and Ethics 32 (4):626-640.
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  8.  19
    Populations and Genetics: Legal and Socio-Ethical Perspectives.Bartha Maria Knoppers (ed.) - 2003 - Martinus Nijhoff.
    This book of selected papers covers population research and banking as well as accompanying confidentiality, and governance concerns.
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  9.  1
    Return of Results: Towards a Lexicon?Bartha Maria Knoppers & Amy Dam - 2011 - Journal of Law, Medicine and Ethics 39 (4):577-582.
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  10.  20
    Neuroethics, New Ethics?Bartha Maria Knoppers - 2005 - American Journal of Bioethics 5 (2):33.
  11.  3
    Biobanking: International Norms.Bartha Maria Knoppers - 2005 - Journal of Law, Medicine and Ethics 33 (1):7-14.
  12.  1
    The sIRB System: A Single Beacon of Progress in the Revised Common Rule?Vasiliki Rahimzadeh, Edward S. Dove & Bartha Maria Knoppers - 2017 - American Journal of Bioethics 17 (7):43-46.
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  13.  16
    Bio-Banking.Bartha Maria Knoppers & Madelaine Saginur - 2008 - In Peter A. Singer & A. M. Viens (eds.), The Cambridge Textbook of Bioethics. Cambridge University Press.
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  14.  12
    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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  15.  16
    ACCE, Pharmacogenomics, and Stopping Clinical Trials: Time to Extend the CONSORT Statement?Bartha M. Knoppers, Yann Joly & Vural Ozdemir - 2011 - 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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  16.  8
    INTRODUCTION: From the Right to Know to the Right Not to Know.Bartha Maria Knoppers - 2014 - Journal of Law, Medicine & Ethics 42 (1):6-10.
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  17.  9
    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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  18.  8
    Currents in Contemporary Bioethics.Yann Joly, Clarissa Allen & Bartha M. Knoppers - 2012 - Journal of Law, Medicine & Ethics 40 (1):143-146.
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  19.  2
    The Challenge of Informed Consent and Return of Results in Translational Genomics: Empirical Analysis and Recommendations.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 - Journal of Law, Medicine and Ethics 42 (3):344-355.
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  20.  2
    INTRODUCTION: From the Right to Know to the Right Not to Know.Bartha Maria Knoppers - 2014 - Journal of Law, Medicine and Ethics 42 (1):6-10.
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  21.  3
    The Challenge of Informed Consent and Return of Results in Translational Genomics: Empirical Analysis and Recommendations.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 - 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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  22.  7
    Storing Newborn Blood Spots: Modern Controversies.Linda Kharaboyan, Denise Avard & Bartha Maria Knoppers - 2004 - Journal of Law, Medicine & Ethics 32 (4):741-748.
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  23.  2
    The Ethics Weathervane.Bartha Maria Knoppers & Ruth Chadwick - 2015 - BMC Medical Ethics 16 (1):1-5.
    BackgroundGlobal collaboration in genomic research is increasingly both a scientific reality and an ethical imperative. This past decade has witnessed the emergence of six new, interconnected areas of ethical consensus and emphasis for policy in genomics: governance, security, empowerment, transparency, the right not to know, and globalization.DiscussionThe globalization of genomic research warrants an approach to governance policies grounded in human rights.SummaryA human rights approach activates the ethical principles underpinning genomic research. It lends force to the right of all citizens to (...)
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  24.  2
    The Best Interests of the Child and the Return of Results in Genetic Research: International Comparative Perspectives.Ma’N. H. Zawati, David Parry & Bartha M. Knoppers - 2014 - 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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  25.  3
    Newborn Genetic Screening: Ethical and Social Considerations for the Nineties.Claud M. Laberge & Bartha Maria Knoppers - 1990 - Journal International de Bioethique= International Journal of Bioethics 2 (1):5-12.
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  26.  3
    Demystifying Biobanks.Bartha M. Knoppers, Edward S. Dove & Ma'N. H. Zawati - 2013 - Hastings Center Report 43 (5):4-5.
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  27.  7
    Rationale for an Integrated Approach to Genetic Epidemiology.Claude M. Laberge & Bartha Maria Knoppers - 1992 - Bioethics 6 (4):317–330.
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  28.  2
    Does Policy Grow on Trees?Bartha M. Knoppers - 2014 - 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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  29.  2
    Genetics and Stem Cell Research : Models of International Policy-Making.Bartha Maria Knoppers, Emily Kirby & Rosario Isasi - 2010 - In John Elliott, W. Calvin Ho & Sylvia S. N. Lim (eds.), Bioethics in Singapore: The Ethical Microcosm. World Scientific.
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  30.  1
    Genetic Information: Use and Abuse.Bartha Maria Knoppers - forthcoming - Bioethics for Scientists.
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  31.  1
    An Implementation Framework for the Feedback of Individual Research Results and Incidental Findings in Research.Adrian Thorogood, Yann Joly, Bartha Maria Knoppers, Tommy Nilsson, Peter Metrakos, Anthoula Lazaris & Ayat Salman - 2014 - 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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  32.  2
    INTRODUCTION: Return of Research Results: How Should Research Results Be Handled?Bartha Maria Knoppers & Emmanuelle Lévesque - 2011 - Journal of Law, Medicine & Ethics 39 (4):574-576.
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  33.  2
    Introduction.Mark A. Rothstein & Bartha Maria Knoppers - 2005 - Journal of Law, Medicine & Ethics 33 (1):6-6.
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  34.  1
    The HUGO Ethics Committee: Six Innovative Statements.Dorothy Wertz & Bartha Maria Knoppers - 2003 - New Review of Bioethics 1 (1):27-40.
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  35.  2
    Ethical Issues in Secondary Uses of Human Biological Materials From Mass Disasters.Bartha Maria Knoppers, Madelaine Saginur & Howard Cash - 2006 - 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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  36. Currents in Contemporary Bioethics.Yann Joly, Clarissa Allen & Bartha M. Knoppers - 2012 - Journal of Law, Medicine and Ethics 40 (1):143-146.
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  37. Storing Newborn Blood Spots: Modern Controversies.Linda Kharaboyan, Denise Avard & Bartha Maria Knoppers - 2004 - Journal of Law, Medicine and Ethics 32 (4):741-748.
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  38. Book Reviews-Legal Rights and Human Genetic Material.Bartha Maria Knoppers, Timothy Caulfield & T. Douglas Kinsella - 1998 - Bioethics 12 (4):343.
     
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  39. Ethical Issues in Secondary Uses of Human Biological Materials From Mass Disasters.Bartha Maria Knoppers, Madelaine Saginur & Howard Cash - 2006 - Journal of Law, Medicine and Ethics 34 (2):352-365.
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  40. INTRODUCTION: Return of Research Results: How Should Research Results Be Handled?Bartha Maria Knoppers & Emmanuelle Lévesque - 2011 - Journal of Law, Medicine and Ethics 39 (4):574-576.
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  41. Criminal Prohibition of Wrongful Re‑Identification: Legal Solution or Minefield for Big Data?Mark Phillips, Edward S. Dove & Bartha M. Knoppers - forthcoming - Journal of Bioethical Inquiry:1-13.
    The collapse of confidence in anonymization as a robust approach for preserving the privacy of personal data has incited an outpouring of new approaches that aim to fill the resulting trifecta of technical, organizational, and regulatory privacy gaps left in its wake. In the latter category, and in large part due to the growth of Big Data–driven biomedical research, falls a growing chorus of calls for criminal and penal offences to sanction wrongful re-identification of “anonymized” data. This chorus cuts across (...)
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  42. Introduction.Mark A. Rothstein & Bartha Maria Knoppers - 2005 - Journal of Law, Medicine and Ethics 33 (1):6-6.
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  43. INTRODUCTION: Harmonizing Privacy Laws to Enable International Biobank Research.Mark A. Rothstein & Bartha Maria Knoppers - 2015 - Journal of Law, Medicine and Ethics 43 (4):673-674.
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