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  1.  33
    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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  2. Country Reports.Ma'N. H. Zawati, Don Chalmers, Sueli G. Dallari, Marina de Neiva Borba, Miriam Pinkesz, Yann Joly, Haidan Chen, Mette Hartlev, Liis Leitsalu, Sirpa Soini, Emmanuelle Rial-Sebbag, Nils Hoppe, Tina Garani-Papadatos, Panagiotis Vidalis, Krishna Ravi Srinivas, Gil Siegal, Stefania Negri, Ryoko Hatanaka, Maysa Al-Hussaini, Amal Al-Tabba', Lourdes Motta-Murgía, Laura Estela Torres Moran, Aart Hendriks, Obiajulu Nnamuchi, Rosario Isasi, Dorota Krekora-Zajac, Eman Sadoun, Calvin Ho, Pamela Andanda, Won Bok Lee, Pilar Nicolás, Titti Mattsson, Vladislava Talanova, Alexandre Dosch, Dominique Sprumont, Chien-Te Fan, Tzu-Hsun Hung, Jane Kaye, Andelka Phillips, Heather Gowans, Nisha Shah & James W. Hazel - 2019 - Journal of Law, Medicine and Ethics 47 (4):582-704.
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  3. Anti-Selection & Genetic Testing in Insurance: An Interdisciplinary Perspective.Dexter Golinghorst, Aisling de Paor, Yann Joly, Angus S. Macdonald, Margaret Otlowski, Richard Peter & Anya E. R. Prince - 2022 - Journal of Law, Medicine and Ethics 50 (1):139-154.
    Anti-selection occurs when information asymmetry exists between insurers and applicants. When an applicant knows they are at high risk of loss, but the insurer does not, the applicant may try to use this knowledge differential to secure insurance at a lower premium that does not match risk.
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  4.  2
    Human Rights in the Postgenomic Era: Challenges and Opportunities Arising with Epigenetics.Charles Dupras, Yann Joly & Emmanuelle Rial-Sebbag - 2020 - Social Science Information 59 (1):12-34.
    Over the past twenty-five years, international organizations have adopted human rights declarations in an attempt to address emerging ethical, legal and social concerns associated with genetic research and technologies. While these declarations point to important challenges and potential issues in genetics, the focus on genetics has been criticized for promoting the idea that there is something unique about our genes, and that therefore, they deserve special protections in our laws. It is also argued that this ‘genetic exceptionalism’ perspective has contributed (...)
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  5.  11
    The European Union's Adequacy Approach to Privacy and International Data Sharing in Health Research.Jennifer Stoddart, Benny Chan & Yann Joly - 2016 - Journal of Law, Medicine and Ethics 44 (1):143-155.
    The European Union approach to data protection consists of assessing the adequacy of the data protection offered by the laws of a particular jurisdiction against a set of principles that includes purpose limitation, transparency, quality, proportionality, security, access, and rectification. The EU's Data Protection Directive sets conditions on the transfer of data to third countries by prohibiting Member States from transferring to such countries as have been deemed inadequate in terms of the data protection regimes. In theory, each jurisdiction is (...)
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  6.  18
    Return of Research Results: General Principles and International Perspectives.Emmanuelle Lévesque, Yann Joly & Jacques Simard - 2011 - Journal of Law, Medicine and Ethics 39 (4):583-592.
    Five years ago, an article co-written by two of us (Joly and Simard) presented an emerging trend to disclose certain individual genetic results to research participants. Since then, both technologies and research practices have evolved significantly. Given this rapid evolution, our goal is to provide updated and thorough guidance on this issue. Our paper begins by identifying the ethical principles that support the return of results: justice, beneficence, and respect for persons. Then, it presents the results of an analysis of (...)
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  7.  9
    Studying Vulnerable Populations Through an Epigenetics Lens: Proceed with Caution.Katie Saulnier, Alison Berner, Stamatina Liosi, Brian Earp, Courtney Berrios, Stephanie O. M. Dyke, Charles Dupras & Yann Joly - 2022 - Canadian Journal of Bioethics / Revue canadienne de bioéthique 5 (1).
    Epigenetics – the study of mechanisms that influence and modify gene expression – is providing unique insights into how an individual’s social and physical environment impact the body at a molecular level, particularly in populations that experience stigmatization and trauma. Researchers are employing epigenetic studies to illuminate how epigenetic modifications lead to imbalances in health outcomes for vulnerable populations. However, the investigation of factors that render a population epigenetically vulnerable present particular ethical and methodological challenges. Here we are concerned with (...)
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  8.  24
    Policy Recommendations for Addressing Privacy Challenges Associated with Cell-Based Research and Interventions.Ubaka Ogbogu, Sarah Burningham, Adam Ollenberger, Kathryn Calder, Li Du, Khaled El Emam, Robyn Hyde-Lay, Rosario Isasi, Yann Joly, Ian Kerr, Bradley Malin, Michael McDonald, Steven Penney, Gayle Piat, Denis-Claude Roy, Jeremy Sugarman, Suzanne Vercauteren, Griet Verhenneman, Lori West & Timothy Caulfield - 2014 - BMC Medical Ethics 15 (1):7.
    The increased use of human biological material for cell-based research and clinical interventions poses risks to the privacy of patients and donors, including the possibility of re-identification of individuals from anonymized cell lines and associated genetic data. These risks will increase as technologies and databases used for re-identification become affordable and more sophisticated. Policies that require ongoing linkage of cell lines to donors’ clinical information for research and regulatory purposes, and existing practices that limit research participants’ ability to control what (...)
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  9.  11
    The View of CRISPR Patents Through the Lens of Solidarity and the Public Good.Benjamin Capps, John J. Mulvihill, Yann Joly & Tamra Lysaght - 2018 - American Journal of Bioethics 18 (12):54-56.
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  10.  12
    Return of Research Results: General Principles and International Perspectives.Emmanuelle Lévesque, Yann Joly & Jacques Simard - 2011 - Journal of Law, Medicine and Ethics 39 (4):583-592.
    Five years ago, an article co-written by some of us presented an emerging trend to disclose some individual genetic results to research participants within the international research community. At the time, ethical norms and scholarly publications on the return of results often did not distinguish between the return of research results in general and the return of unexpected results. Both technologies and research practices have evolved significantly. Today whole genome and exome sequencing are increasingly affordable and frequently used in genetic (...)
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  11. Les enjeux québécois de la discrimination génétique : L’expérience d’un forum en ligne.Gratien Dalpé, Miriam Pinkesz, Gabriel Marrocco & Yann Joly - 2020 - Les Ateliers de l'Éthique / the Ethics Forum 15 (1-2):4-38.
    Empirical research regarding genetic discrimination in the province of Quebec is largely limited. As such, this study aims, through a qualitative methodology, to explore and collect the opinions, experiences and knowledge of Quebecers regarding GD. In accordance with the exploratory objectives of this study, we chose the online forum approach as a means to extract qualitative data that would most accurately represent the perspectives of the Quebec public on various themes relating to GD. Participants’ comments on the forum indicate that (...)
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  12.  15
    Privacy and Biobanking in China: A Case of Policy in Transition.Haidan Chen, Benny Chan & Yann Joly - 2015 - Journal of Law, Medicine and Ethics 43 (4):726-742.
    With a population of over 1.3 billion, China is the most populous country in the world. It is facing an acute aging population problem, with a projected 440 million residents over age 60 and 101 million over age 80 by 2050. Furthermore, rapid industrialization and urbanization in China have resulted in serious air pollution and associated public health problems, including an increase in respiratory diseases and cancers. These and other demographic trends have generated concerns about the cost of health care (...)
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  13.  36
    Currents in Contemporary Bioethics: Open Access as Benefit Sharing? The Example of Publicly Funded Large-Scale Genomic Databases.Yann Joly, Clarissa Allen & Bartha M. Knoppers - 2012 - Journal of Law, Medicine and Ethics 40 (1):143-146.
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  14.  3
    Locating Biobanks in the Canadian Privacy Maze.Katie M. Saulnier & Yann Joly - 2016 - Journal of Law, Medicine and Ethics 44 (1):7-19.
    Although Canada has not yet enacted any biobanking-specific privacy law, guidance and oversight are provided via various federal and provincial health and privacy-related laws as well as via ethics and policy documents. The primary policy document governing health research, the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, provides the framework for the strong role of Research Ethics Boards in Canada, and limits research funding from Canada's three main federal funding agencies to those who agree to adhere to its (...)
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  15. Routledge Handbook of Medical Law and Ethics.Yann Joly & Bartha Maria Knoppers - 2014 - Routledge.
    This book explores the scope, application and role of medical law, regulatory norms and ethics, and addresses key challenges introduced by contemporary advances in biomedical research and healthcare. While mindful of national developments, the handbook supports a global perspective in its approach to medical law. Contributors include leading scholars in both medical law and ethics, who have contributed specially commissioned pieces in order to present a critical overview and analysis of the current state of medical law and ethics. Each chapter (...)
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  16.  1
    Privacy and Biobanking in China: A Case of Policy in Transition.Haidan Chen, Benny Chan & Yann Joly - 2015 - Journal of Law, Medicine and Ethics 43 (4):726-742.
    With a population of over 1.3 billion, China is the most populous country in the world. It is facing an acute aging population problem, with a projected 440 million residents over age 60 and 101 million over age 80 by 2050. Furthermore, rapid industrialization and urbanization in China have resulted in serious air pollution and associated public health problems, including an increase in respiratory diseases and cancers. These and other demographic trends have generated concerns about the cost of health care (...)
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  17.  9
    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.
  18.  5
    Science Fiction Authors’ Perspectives on Human Genetic Engineering.Derek So, Kelsey Crocker, Robert Sladek & Yann Joly - forthcoming - Medical Humanities:medhum-2020-012041.
    Participants in the human gene editing debate often consider examples from science fiction but have rarely engaged directly with the science fiction community as stakeholders. To understand how science fiction authors develop and spread their views on gene editing, we created an online questionnaire that was answered by 78 authors, including 71 who had previously written about genetic engineering. When asked which ethical issues science fiction should explore, respondents most frequently mentioned affordability, new social divisions, consent and unforeseen safety risks. (...)
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  19.  29
    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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  20.  19
    Sharing Genetic Information Online: An Exploration of GINA's 2.0 Frontier.Vassilis Ragoussis, Ida Ngueng Feze & Yann Joly - 2014 - American Journal of Bioethics 14 (11):53-55.
  21.  16
    The Role of Whole Genome and Whole Exome Sequencing in Preventive Genomic Sequencing Programs.Gabrielle Bertier, Ma'N. H. Zawati & Yann Joly - 2015 - American Journal of Bioethics 15 (7):22-24.
  22.  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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  23.  6
    Disclosure of Insurability Risks in Research and Clinical Consent Forms.Shahad Salman, Ida Ngueng Feze & Yann Joly - 2016 - Global Bioethics 27 (1):38-49.
    ABSTRACTGenetic testing results and research findings raise concerns about access to genetic information by insurers. Recently, the Canadian Life and Health Insurance Association reaffirmed its prerogative to request, for underwriting purposes, the disclosure of clinical and research genetic test results if the participant/patient or his physician has knowledge of the results. Studies have shown that access to genetic information to determine insurability can, in limited instances, lead to actual, or fear of, genetic discrimination, result in individuals refusing to undergo testing (...)
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  24.  9
    Currents in Contemporary Ethics.Yann Joly & Gillian Nycum - 2007 - Journal of Law, Medicine and Ethics 35 (4):734-738.
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  25.  3
    Currents in Contemporary Ethics.Yann Joly & Gillian Nycum - 2007 - Journal of Law, Medicine and Ethics 35 (4):734-738.
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