40 found
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  1. Regulation of International Direct-to-Participant Genomic Research: Symposium Introduction.Mark A. Rothstein & Bartha Maria Knoppers - 2019 - Journal of Law, Medicine and Ethics 47 (4):579-580.
  2.  2
    The Genetic Family as Patient?Bartha Maria Knoppers & Kristina Kekesi-Lafrance - 2020 - American Journal of Bioethics 20 (6):77-80.
    Volume 20, Issue 6, June 2020, Page 77-80.
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  3.  15
    Model Consent Clauses for Rare Disease Research.Minh Thu Nguyen, Jack Goldblatt, Rosario Isasi, Marlene Jagut, Anneliene Hechtelt Jonker, Petra Kaufmann, Laetitia Ouillade, Fruszina Molnar-Gabor, Mahsa Shabani, Eric Sid, Anne Marie Tassé, Durhane Wong-Rieger & Bartha Maria Knoppers - 2019 - BMC Medical Ethics 20 (1):1-7.
    Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants’ overall protection. A global Task Force (...)
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  4.  2
    International mHealth Research: Old Tools and New Challenges.Michael Lang, Bartha Maria Knoppers & Ma’N. H. Zawati - 2020 - Journal of Law, Medicine and Ethics 48 (1_suppl):178-186.
    In this paper, we outline the policy implications of mobile health research conducted at the international level. We describe the manner in which such research may have an international dimension and argue that it is not likely to be excluded from conventionally applicable international regulatory tools. We suggest that closer policy attention is needed for this rapidly proliferating approach to health research.
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  5.  7
    The ‘Serious’ Factor in Germline Modification.Erika Kleiderman, Vardit Ravitsky & Bartha Maria Knoppers - 2019 - Journal of Medical Ethics 45 (8):508-513.
    Current advances in assisted reproductive technologies aim to promote the health and well-being of future children. They offer the possibility to select embryos with the greatest potential of being born healthy and may someday correct faulty genes responsible for heritable diseases in the embryo ). Most laws and policy statements surrounding HGGM refer to the notion of ‘serious’ as a core criterion in determining what genetic diseases should be targeted by these technologies. Yet, this notion remains vague and poorly defined, (...)
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  6.  6
    Comparative Approaches to Biobanks and Privacy.Mark A. Rothstein, Bartha Maria Knoppers & Heather L. Harrell - 2016 - Journal of Law, Medicine and Ethics 44 (1):161-172.
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  7.  47
    Human Genetic Research: Emerging Trends in Ethics.Ruth Chadwick & Bartha Maria Knoppers - 2005 - .
    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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  8.  9
    Return of Results: Towards a Lexicon?Bartha Maria Knoppers & Amy Dam - 2011 - Journal of Law, Medicine and 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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  9.  6
    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.  45
    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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  11.  12
    Reciprocity and the Quest for Meaningful Disclosure.Ma’N. H. Zawati & Bartha Maria Knoppers - 2019 - American Journal of Bioethics 19 (5):36-38.
    Volume 19, Issue 5, May 2019, Page 36-38.
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  12.  25
    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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  13.  13
    Biobanking: International Norms.Bartha Maria Knoppers - 2005 - Journal of Law, Medicine and Ethics 33 (1):7-14.
  14.  11
    Biobanking: International Norms.Bartha Maria Knoppers - 2005 - Journal of Law, Medicine and Ethics 33 (1):7-14.
  15.  11
    Genetically Enhanced Minors: Whose Responsibility?Erika Kleiderman, Audrey Boily & Bartha Maria Knoppers - 2018 - American Journal of Bioethics 18 (6):1-3.
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  16.  8
    Return of “Accurate” and “Actionable” Results: Yes!Bartha Maria Knoppers & Claude Laberge - 2009 - American Journal of Bioethics 9 (6-7):107-109.
  17.  19
    One Size Does Not Fit All: Toward “Upstream Ethics”?Vural Ozdemir & Bartha Maria Knoppers - 2010 - American Journal of Bioethics 10 (6):42-44.
  18.  7
    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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  19.  28
    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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  20.  14
    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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  21.  2
    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.
    The Journal of Law, Medicine &Ethics, Volume 43, Issue 4, Page 673-674, Winter 2015.
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  22.  30
    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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  23.  1
    Legal and Ethical Challenges of International Direct-to-Participant Genomic Research: Conclusions and Recommendations.Mark A. Rothstein, Ma'N. H. Zawati, Laura M. Beskow, Kathleen M. Brelsford, Kyle B. Brothers, Catherine M. Hammack-Aviran, James W. Hazel, Yann Joly, Michael Lang, Dimitri Patrinos, Andrea Saltzman & Bartha Maria Knoppers - 2019 - Journal of Law, Medicine and Ethics 47 (4):705-731.
  24.  4
    ‘Serious’ Factor—a Relevant Starting Point for Further Debate: A Response.Erika Kleiderman, Vardit Ravitsky & Bartha Maria Knoppers - 2020 - Journal of Medical Ethics 46 (2):153-155.
    In this reply, we wish to defend our original position and address several of the points raised by two excellent responses. The first response questions the relevance of the notion of ‘serious’ within the context of human germline genome modification. We argue that the ‘serious’ factor is relevant and that there is a need for medical and social lenses to delineate the limits of acceptability and initial permissible applications of HGGM. In this way, ‘serious’ acts as a starting point for (...)
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  25.  32
    Neuroethics, New Ethics?Bartha Maria Knoppers - 2005 - American Journal of Bioethics 5 (2):33.
  26.  7
    Introduction.Mark A. Rothstein & Bartha Maria Knoppers - 2005 - Journal of Law, Medicine and Ethics 33 (1):6-6.
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  27.  4
    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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  28.  9
    Introduction.Mark A. Rothstein & Bartha Maria Knoppers - 2005 - Journal of Law, Medicine and Ethics 33 (1):6-6.
  29.  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.
  30. 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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  31.  14
    Rationale for an Integrated Approach to Genetic Epidemiology.Claude M. Laberge & Bartha Maria Knoppers - 1992 - Bioethics 6 (4):317–330.
  32.  14
    The Best Interests of the Child and the Return of Results in Genetic Research: International Comparative Perspectives.Ma’N. H. Zawati, David Parry & Bartha Maria 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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  33.  12
    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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  34.  18
    Storing Newborn Blood Spots: Modern Controversies.Linda Kharaboyan, Denise Avard & Bartha Maria Knoppers - 2004 - Journal of Law, Medicine and Ethics 32 (4):741-748.
  35.  10
    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.
  36.  1
    Regulatory Landscape of International Direct-to-Participant Genomic Research: Time to Untie the Gordian Knot?Mark A. Rothstein, Ma'N. H. Zawati & Bartha Maria Knoppers - 2019 - Journal of Law, Medicine and Ethics 47 (2):336-341.
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  37.  6
    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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  38.  4
    Genetic Information: Use and Abuse.Bartha Maria Knoppers - forthcoming - Bioethics for Scientists.
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  39.  5
    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.
    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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  40. 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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