Faire preuve de respect
Chaque utilisateur doit traiter les autres avec respect. Vous devez exprimer votre opinion et/ou désaccord avec une idée sans insulter, stigmatiser ou faire de la cyberintimidation à l’endroit des autres participants.
Un seul compte par utilisateur
La participation au Forum se veut transparente et honnête donc nous n’acceptons pas que les utilisateurs aient plusieurs comptes sur le Forum ou qu’ils partagent leur compte avec d’autres personnes.
Consultez les sections existantes avant de publier
Avant de publier votre message, prenez le temps de revoir les différents échanges sur le Forum afin de respecter la section appropriée. Votre message pourrait être déplacé sans préavis par l’équipe de modération s’il se trouve dans la mauvaise section.
Pas de publicité ni de sollicitations
Notre forum ne permet pas la publication de publicité (incluant la publicité personnelle, commerciale ou à des fins non-lucratives). Les liens hypertextes qui sont postés dans le forum doivent être pour des fins informatives, s’ils ne le sont pas, ils seront considérés comme de la publicité.
Pas de contenu illégal, obscène ou diffamatoire
Les publications ayant un contenu illégal, violent, obscène ou discriminatoire ne sont pas autorisées sur le forum.
Protection de la vie privée
Les données personnelles sont des informations relatives à une personne physique identifiée ou identifiable. Une personne est identifiable dès que l’on peut l’identifier, directement ou indirectement, par exemple à l’aide d’un numéro d’identification ou de plusieurs éléments qui lui sont propres. Pour cette raison, les utilisateurs ne doivent pas divulguer leurs noms, adresses et numéros de téléphone, et ceux d’autres personnes (incluant d’autres participants), sur le Forum. Les utilisateurs doivent se créer un pseudonyme qui ne peut pas permettre leur identification sur le forum.
L’adresse courriel utilisée pour vous enregistrer sur le forum sera conservée dans une banque de données pour la durée du forum seulement et sera par la suite dissociée des données.
Des métadonnées peuvent être collectées lors de vos visites sur le site du forum : adresses IP ou Mac et témoins (cookies).
Durant le processus d’enregistrement, quelques questions démographiques vous seront posées. Ses questions sont générales et ne serviront qu’à des fins de recherche seulement.
En participant au forum, vous consentez à la collecte, au stockage, au transfert et à l’utilisation par l’équipe de l’Observatoire de la discrimination génétique des informations que vous avez publiées et des données collectées sur le Forum.
Confidentialité :
Vos informations resteront anonymes et confidentielles. Aucune information permettant de vous identifier ne sera publiée. Les publications que vous allez faire sur le forum seront associées aux thèmes et questions débattus, mais les données personnelles resteront anonymes pendant et après la cessation du forum. Vos informations personnelles ne seront pas partagées avec les autres participants ou avec des parties tierces durant ou après la fin du forum. Vos informations rendues anonymes seront archivées pour la durée du projet.
Informations protégées par le droit d’auteur :
Tout le contenu du forum, incluant les publications créées par les participants, est la propriété du Centre de Génomique et Politiques (CGP) de l’Université McGill. Ainsi, en acceptant de participer, vous renoncez et/ou acceptez de transférer au CGP tous les droits d’auteurs que vous pourriez posséder en rapport aux publications que vous ferez sur le forum.
Responsabilités légales
L’équipe du Forum et celle de l’Observatoire de la discrimination génétique ne peuvent être tenues responsables du contenu des informations publiées sur le Forum. Toutes les informations publiées sur le Forum par les utilisateurs ne peuvent être vérifiées et peuvent contenir des renseignements erronés ou qui ne respectent pas les règles du Forum. Les conseils donnés gracieusement sur le Forum ne peuvent être considérés comme des avis juridiques ou professionnels. Les participants sont responsables de leurs agissements sur et en dehors du Forum. Pour tout problème juridique ou de santé, il vous est recommandé de requérir les services d’un professionnel qualifié. L’Observatoire de la discrimination génétique est le seul propriétaire du contenu publié sur le Forum. En participant à celui-ci, vous renoncez à tout droit d’auteur sur vos publications.
L'équipe de modération
L’équipe de modération est là pour veiller au bon déroulement du forum dans le respect des règles établies, qu’elle peut interpréter et renforcer au besoin. Elle a l’autorité de revoir et d’évaluer les publications faites sur le forum, et de désactiver un compte utilisateur ou de supprimer du contenu publié, sans préavis.
La procédure de modération générale lors d’une violation des règles est la suivante :
L’équipe de modération peut modifier cette procédure à tout moment, ou procéder directement à l’étape trois (suspension définitive), sans préavis selon la gravité de la violation. Les utilisateurs peuvent discuter avec l’équipe de modération concernant un avertissement tant que l’échange reste bref, respectueux, et en privé. Cependant la décision de l’équipe est généralement finale et sans appel. Toute personne qui ferait parvenir un message d’insulte à l’équipe de modération en réponse à un avertissement sera exclue de façon définitive du forum.
Lorsque vous aurez accédé au forum, un court article de journal sur le thème de la DG vous sera présenté ainsi qu’une ou plusieurs questions reliée(s) au thème de l’article. Une fois votre lecture complétée, vous aurez alors la possibilité d’exprimer votre point(s) de vue en répondant à la question posée. Vous pourrez publier en réponse à la question posée votre opinion sous forme de commentaires. Vous pourrez également interagir avec d’autres participants en répondant à leurs commentaires. Vous pourrez entrer et sortir du forum à votre guise et aussi fréquemment que vous le désirez. Un modérateur sera en charge de relancer et clôturer les discussions sur une question donnée.
Le forum se déroulera sur une période de 4 à 8 semaines. Durant cette période, vous êtes fortement encouragés à vous exprimer sur les questions présentées et à interagir par rapport aux commentaires des autres participants. Vous pourrez accéder en tout temps au forum en vous rendant à l’adresse virtuelle du forum (forum.gdo.global) en utilisant un appareil connecté à l’Internet (ex. ordinateur de bureau, ordinateur portable, téléphone intelligent, tablette électronique).
Directives du forum (cette information sera accessible sur le site du forum en tout temps pour tous les participants pendant toute la durée du forum) :
L’équipe de modération : une équipe s’assurera que les règles du forum sont respectées. Cette équipe aura le pouvoir d’interpréter et d’appliquer les règles mentionnées précédemment. L’équipe sera également investie du pouvoir de revoir et d’évaluer les publications faites sur le forum, de désactiver n’importe quel compte d’utilisateur et d’effacer du contenu qui a été publié, et ce sans préavis. Si une règle du forum a été transgressée, la procédure suivante sera appliquée:
L’équipe de modération peut modifier cette procédure à n’importe quel moment, ou expulser définitivement un utilisateur, et ce sans préavis, selon la gravité de la violation des règles de conduite. Les participants peuvent communiquer avec l’équipe de modération concernant un avertissement pourvu que les échanges soient brefs, respectueux et faits en privé. Toutefois, l’équipe se garde le droit de rendre une décision qui est finale et sans appel. Tout participant qui envoie un message insultant aux membres de l’équipe se verra retirer son accès au forum de façon permanente.
Avantages découlant de la participation :
Le forum ne vous offrira aucun avantage personnel en contrepartie de votre participation. Toutefois, des chercheurs utiliseront ce forum à des fins de recherche observationnelle. Ainsi, votre participation pourrait contribuer à l’avancée de la recherche en facilitant la collecte de données liées à la DG et à la gouvernance de l’information génétique au Québec. Ces données pourront être utilisées pour l’élaboration de futures lois et politiques publiques. Les résultats de cette étude seront publiés dans des revues à libre accès. Ces publications pourront être disponibles en ligne à http://www.genomicsandpolicy.org/.
Risques associés à cette recherche :
En tant que participant au forum, nous ne prévoyons aucun risque physique, psychologique ou social pour vous étant donné que vous partagerez votre point de vue de façon anonyme sur des thèmes et questions liés à la DG. Les règles de conduite du forum ont été mises en place pour réduire le risque d’impact négatif entre les participants. Toutefois, malgré la mise en place d’un système pour filtrer le contenu des publications, il reste possible que le contenu de certaines publications ne corresponde pas aux règles de conduite du forum et soit vu par d’autres participants avant que le modérateur ne l’efface. S’il advenait que vous preniez connaissance d’une publication que vous jugez inadéquate, vous pouvez la rapporter au modérateur en tout temps (prenez note qu’une réponse peut prendre de 24 à 48 heures ouvrables).
L’équipe du forum n’est pas responsable du contenu publié sur le forum. Le contenu des publications sur le forum peut inclure des informations qui sont fausses ou qui ne respectent pas les règles de conduite du forum. Les avis qui sont affichés sur le forum ne sont pas des avis légaux. Les participants sont responsables de leur comportement à l’intérieur et en dehors du forum. Si vous avez ou développez des problèmes de santé ou de nature légale découlant de votre participation au forum, nous vous recommandons de requérir les services d’un professionnel compétent en la matière.
Participation libre:
Votre participation au forum est complètement volontaire. Vous êtes libre de vous retirer du forum à n’importe quel moment. Vous pouvez décider d’arrêter de participer et demander que votre compte d’utilisateur soit désactivé en envoyant un courriel au modérateur. Vous n’avez pas à justifier votre décision de quitter le forum. Vous recevrez un courriel confirmant que votre compte d’utilisateur a été désactivé. Notez que la désactivation de votre compte est permanente et que vous ne pourrez plus par la suite vous joindre à nouveau au forum s’il n’est pas encore terminé.
Votre retrait du forum n’aura aucune conséquence préjudiciable de la part du forum. Si vous vous retirez du forum, l’information qui a déjà été collectée avant votre départ sera rendue anonyme et archivée en tant que donnée de recherche. Si vous vous retirez avant le début de la collecte de données, votre participation ne comptera pas et ne sera prise en compte qu’à des fins méthodologiques en tant que statistiques des individus s’étant inscrits. Les informations que vous aurez données lors de votre inscription resteront confidentielles.
Si vous décidez de vous retirer du forum, vous pourrez entrer en communication avec le modérateur en tout temps à l’aide du formulaire de contact ci-dessous (tout en mentionnant le courriel que vous avez utilisé pour vous inscrire). Allouez une période de 24 à 48 heures ouvrables pour une réponse.
Formulaire de contact :
Si vous voulez obtenir de l’information supplémentaire concernant cette étude, si vous avez d’autres questions à propos de vos droits reliés à votre participation à cette recherche, ou si vous voulez vous retirer du forum, envoyez un courriel au modérateur du forum en mentionnant l’objet de votre requête.
Indemnisation:
Vous ne recevrez aucune indemnité financière pour votre participation à ce forum.
Clause de non-responsabilité:
En m’inscrivant et en accédant au forum, j’atteste que je comprends et respecterai les règles de conduite du forum.
J’ai lu les informations précédentes, j’ai reçu les réponses à mes questions à propos de ma participation et je comprends les objectifs, la nature, les risques, les avantages et les inconvénients associés à ma participation.
J’accepte de participer à ce forum à mes propres risques, tout en sachant que je peux me retirer à tout moment, sans subir de préjudice.
Pour récupérer votre mot de passe, veuillez nous faire parvenir votre adresse courriel
L'ÉQUIPE DE L'ODG
Mei-Chen Chang
Administratrice
Mei-Chen Chang est titulaire d'un baccalauréat en sciences sociales de l'Université Ritsumeikan Asie-Pacifique au Japon. Elle est assistante de bureau auprès du professeur Yann Joly au Centre de génomique et politiques (CGP).
Emma Kondrup
Assistante de recherche
Emma Kondrup is an undergraduate student at the McGill Faculty of Science, completing an Honours in Computer Science. Emma’s interests include biomechanics, ethics and artificial intelligence. As an intern at the CGP, she will be working under the supervision of Professor Yann Joly in his ongoing research projects.
Diya Uberoi
Coordinateur
Diya Uberoi is a human rights scholar and advocate, with significant experience working with international and national organizations in the field of health and human rights. Her research interests lie at the intersection of law and public health, with a focus on the role rights-based strategies (litigation, advocacy, community empowerment) play in promoting health policy change. She holds a PhD in International Law from the Graduate Institute for International and Development Studies, an LLM in Global Health Law, a JD, and an MPhil in Psychology.
Diya is the Global Alliance for Genomics and Health (GA4GH) Policy Analyst at the CGP. She will also contribute to the Genetic Discrimination Observatory and GA4GH Genetic Discrimination Workgroup.
Research interests: right to health; international law; equity; non-discrimination; health policy.
Yann Joly
Chercheur principal
Yann Joly, Ph.D. (DCL), FCAHS, Ad.E. is the Research Director of the Centre of Genomics and Policy (CGP). He is a Full Professor at the Faculty of Medicine, Department of Human Genetics cross-appointed at the Bioethics Unit, at McGill University. He was named advocatus emeritus by the Quebec Bar in 2012 and Fellow of the Canadian Academy of Health Sciences in 2017. Prof. Joly is a member of the Canadian Commission for UNESCO (CCU) Sectoral Commission for Natural, Social and Human Sciences. He is the current Chair of the Bioethics Workgroup of the International Human Epigenome Consortium (IHEC) and, of the Ethics and Governance Committee of the International Cancer Genome Consortium (ICGC). He is also a member of the Human Genome Organization (HUGO) Committee on Ethics, Law and Society (CELS).
Prof. Joly’s research interests lie at the interface of the fields of scientific knowledge, health law (biotechnology and other emerging health technologies) and bioethics. He has published his findings in over 120 peer-reviewed articles featured in top legal, ethical and scientific journals. He served as a legal advisor on multiple research ethics committees in the public and private sectors. Prof. Joly also sits on editorial committees and acts as a reviewer for a wide range of publications in his field. In 2012, he received the Quebec Bar Award of Merit (Innovation) for his work on the right to privacy in the biomedical field.
Katherine Cheung
Assistante de recherche
François Brouillet
Programmeur web
Après l’obtention de son premier baccalauréat en Éd. Phys. de l’Université de Montréal, François décide de réaliser un rêve en entreprenant une carrière de chanteur/comédien dans le milieu de la comédie musicale et de l’industrie du disque. Parmi ses réalisations, il a fait partie de la distribution des Misérables (Montréal, Canada, Paris) et a obtenu un disque d’or.
Dans le milieu des années 90, l'internet entrait dans nos vies et François était fasciné par ce phénomène. Il s’inscrit donc en informatique à l’UdeM. Avec un second BSc en poche, François fait ses premières armes de développement web au sein de l’équipe de recherche du professeure Bartha M. Knoppers. Il se tourne dès lors vers les bases de données afin de saisir, structurer et granulariser les données pour leur donner une forme d’intelligence. Puis se rend rapidement compte que le challenge de l’interface web est celui de de refléter les données dans un cadre esthétique et intuitif. Le contenu est toujours le nerf de la guerre.
En 2004, il fonde son entreprise et collabore depuis avec de multiples groupes de recherche à l’université de Montréal, McGill et Concordia dont les travaux gravitent principalement autour de la santé et du droit. Il considère son travail comme sa contribution sociale à la recherche.
Thalia Arawi
American Univ. of Beirut & Med. Center
Liban
Dr. Thalia (Talia) Arawi, (BA, Sociology, MA, Political and Moral Philosophy) PhDs (Philosophy and Bioethics) is Founding Director of the Salim El-Hoss Bioethics and Professionalism Program (SHBPP) at the American University of Beirut Faculty of Medicine and Medical Center. The SHBPP, the first and only Regional Bioethics and Professionalism Program in the Arab Region, was recently announced as the first WHO Collaborating Center for Ethics in the Arab Region. Dr. Arawi is the first Arab to specialize in Bioethics. She is also the Clinical Bioethicist, Clinical Ethics Consultant and Certified Healthcare Mediator at AUBMC where she established the first Bed-Side Clinical Ethics Consultation Service in the Arab Region. Dr. Arawi is the first Arab member to be appointed on the Board of the International Association of Bioethics and is also a member of the American Society of Bioethics, the Canadian Society of Bioethics, the Provincial Health Ethics Network and, the UK Clinical Ethics Network, the Lebanese National Advisory Commission of the Ethics in Life Sciences and Healthcare, to mention but a few. She has also been elected as senior fellow at the ge2p2 global foundation for the advancement of ethical and scientific rigour in research and evidence generation for governance, policy and practice in human rights action, humanitarian response, health, education, heritage stewardship, and sustainable development – serving governments, international agencies, civil society organizations (csos), commercial entities, consortia and alliances then promoted to Senior Fellow. She is also a senior fellow at the ge2p2 Center for Disaster and Humanitarian Ethics. Dr. Arawi is also the first Arab consultant at the Center for Conflict Resolution in Healthcare LLC, Memphis, TN, and member of the WHO COVID-19 Ethics Working Group and was appointed as Liaison Officer and Bioethics Focal Point to the Prime Minister. Dr. Arawi is also a member of the WeCope (World Emergency COVID Pandemic Ethics Committee). She has participated in a multitude of national, regional and international conferences and has several publications on bioethics. Her research interests are mainly in the areas of clinical ethics, biomedical ethics, philosophy of medicine, humanitarian medicine, ethics and refugees, bioethics in conflict zones, ethics and mental health and medical education.
Mykhailo Arych
Nat'l University of Food Technologies
Ukraine
Dr. Mykhailo Arych is an Assistant Professor at the Department of Finance, Institute of Economics and Management, National University of Food Technologies (Ukraine). In 2012, he graduated from the Bucovina State Finance and Economic University (since 2016 included in the Yuriy Fedkovych Chernivtsi National University) with a master's degree in Finance and Credit (Economics). In 2015, he obtained a Ph.D. in Economics from the National University of Food Technologies (2015). For more than eight years, Dr. Arych has been teaching Finance, Insurance and Insurance services. His primary research interests include insurance markets, genetic testing and discrimination in insurance, and agricultural insurance. He was also a co-investigator of the research grant funded by the Ministry of Education and Science of Ukraine for the research entitled 'Comprehensive assessment of the insurance market and development of recommendations for improvements of competitiveness of Ukraine's insurance in the context of European integration' (2017 - 2019). Dr. Arych is a co-author of a book entitled 'Competitiveness of the insurance market of Ukraine in the conditions of intensification of globalization processes: a collective monograph' (2020). Since 2013, he is a member of the organizing committee of the annual international scientific conferences at the National University of Food Technologies. Since September 2019, he is also a member of the Academic Council of the Institute of Economics and Management. In June 2020, Dr. Arych received the Fellowship of the Cabinet of Ministers of Ukraine for young scientists.
Bénédicte Bévière Boyer
Université de Paris 8
France
Bénédicte BEVIERE-BOYER est Maître de conférences-HDR en droit privé à l'UFR de droit de l'Université de Paris 8 et directrice adjointe du Centre de recherches juridique de droit privé et droit de la santé (EA1581). Ses travaux de recherches portent principalement dans le domaine du droit de la bioéthique, l'éthique et le numérique. Elle a écrit divers articles sur la recherche, l'innovation, le numérique, les données de santé, la relation de soins, les principes fondamentaux protecteurs de la personne, l'assistance à la procréation, le diagnostic préimplantatoire, le don d'organes, etc. Elle a organisé plusieurs colloques sur Big Data, l'Intelligence artificielle, la souveraineté numérique, la responsabilité numérique, le vieillissement, etc., ainsi qu'un cycle de conférences de deux ans sur la bioéthique à la Cour de cassation, qui se poursuivra pour un autre cycle de conférences sur le numérique. Elle organise aussi depuis plusieurs années des échanges universitaires avec les universités chinoises (colloques, ouvrages collectifs).
Aisling De Paor
Dublin City University
Irlande
B.C.L., LL.M., Ph.D., Solicitor
Aisling is Associate Professor of Law at the School of Law and Government, Dublin City University, where she lectures modules including ‘Genetics Law and Society’ and ‘Medical Law and Bioethics.’
Aisling graduated from National University of Ireland, Galway with a law degree (B.C.L.) in 2005 and graduated from University College Cork with a masters in law (LL.M.) in 2006. She is a qualified Solicitor (Law Society of Ireland) and trained in a large commercial law firm in Dublin (2006 – 2009). In 2013 Aisling defended her PhD (funded by the Irish Research Council), entitled ‘Advancing Science and Controlling the Misuse of Genetic Information in Employment and Insurance – Towards an Effective European Union Regulatory Framework.’
From 2009 to 2014 Aisling was a part-time Lecturer in Law at the School of Law, NUI Galway, and also worked as a Research Assistant at the Centre for Disability Law and Policy, NUI Galway (2009 – 2010). She is an honorary fellow and an affiliated researcher of the Burton Blatt Institute, Syracuse University, New York and was a visiting scholar at this Institute in October 2012, May 2014 and June 2018.
Aisling’s research interests lie in the fields of genetics law and policy and medical law. She has published widely in these fields in journals including the European Journal of Health Law, the Journal of Community Genetics and the Irish Journal of Medical Science. Aisling is author of a book entitled ‘Genetics, Disability and the Law – Towards an EU Legal Framework’ (Cambridge University Press 2017) and co- editor of a book entitled ‘Genetic Discrimination – Transatlantic Perspectives on the Case for a European Level Legal Response’ (Routledge 2014). She speaks regularly at conferences and other events in Ireland, Europe and internationally.
Edward S. Dove
Edinburgh Law School
Royaume-Uni
Edward (Ted) Dove is Lecturer in Health Law and Regulation at the School of Law, University of Edinburgh, and Deputy Director of the J Kenyon Mason Institute for Medicine, Life Sciences and Law. He holds a Bachelor of Arts degree (BA) in Political Science and Civil Law and Common Law degrees (BCL, LLB) from McGill University, a Master of Laws degree (LLM) from Columbia University, and a PhD in Law from the University of Edinburgh. Ted’s primary research interests are in the areas of biomedical research governance, research ethics oversight, health-related data access and sharing, and health data protection. Currently, Ted is Chair of the General Data Protection Regulation (GDPR) and International Health Data Sharing Forum, which is part of the Global Alliance for Genomics and Health (GA4GH). Ted is also a member of the Scientific Programme Committee for the European Society of Human Genetics (ESHG), and is a member of the Data Access Committee of METADAC (Managing Ethico-social, Technical and Administrative issues in Data ACcess), which is a multi-agency, multi-study data access structure that services several of the UK’s major cohort studies. From 2013-2015, he served as Coordinator for the Regulatory and Ethics Working Group of the GA4GH, wherein he was the lead drafter of the “Framework for Responsible Sharing of Genomic and Health-Related Data”, and from 2014-2017, as Coordinator of the GA4GH’s Ethics Review Equivalency Task Team. From 2011-2015, Ted was a member of the International Cancer Genome Consortium’s (ICGC) Identifiability and Privacy Subgroup. Among other works, he is the co-author of the 11th edition of the leading medical law textbook in the UK, Mason and McCall Smith’s Law and Medical Ethics (Oxford University Press, 2019) and author of the forthcoming open access monograph, Regulatory Stewardship of Health Research: Navigating Participant Protection and Research Promotion (Edward Elgar, 2020).
Dov Greenbaum
Zvi Meitar Institute, Reichman University
Israël
Dov Greenbaum has undergraduate degrees in economics and biology from Yeshiva University and a doctorate in bioinformatics/genetics from Yale University. Dov also has a law degree with a focus on intellectual property from the University of California, Berkeley. Subsequent to his degrees, Dov had two postdoctoral appointments, one at Stanford University and the second at ETH Zurich, both synthesized science, technology, law and society. Dov practiced law for two years at a large multinational law firm in Silicon Valley where he was involved in complex high-stakes civil litigation. Dov continued his practice in Israel, drafting and prosecuting patents in biotech and hitech innovations, including complex algorithms, robotics and missile defense. Currently, Dov is a professor of law and the director of the Zvi Meitar Institute, an academic institute at Reichman University (IDC) a non-government funded private university in the heart of Israel’s technological center. The Institute is broadly interested in the ethical, social and legal concerns arising from new and emerging technologies. To this end, the institute works with stakeholders in in the areas of genomics, blockchain, predictive analytics, autonomous vehicles, AI, VR, AR, deep learning, and other emergent technologies. Dov also has an appointment at Yale University in the Department of Molecular Biophysics and Biochemistry.
Hrefna D. Gunnarsdóttir
University of Copenhagen
Islande
Hrefna D. Gunnarsdóttir est candidate au doctorat au Centre d'études avancées en droit de l'innovation biomédicale (CeBIL), Faculté de droit, Université de Copenhague. Les intérêts de recherche d'Hrefna s'inscrivent dans le cadre de la dignité humaine dans le domaine de la santé, et plus particulièrement dans les domaines de la réduction des risques concernant la protection, l'utilisation et le partage des données relatives à la santé dans le contexte des technologies émergentes, de l'utilisation secondaire des données et des conclusions secondaires. Dans son projet de doctorat, Hrefna explore l'utilisation transparente des données de santé à l'intersection de l'éthique et du droit des données, du point de vue des droits des patients.
Avant d'entreprendre son doctorat, Hrefna a exercé en tant qu'avocate chez Réttur - Aðalsteinsson & Partners, un cabinet d'avocats spécialisé dans les droits de l'homme basé à Reykjavík, en Islande. Hrefna a fourni des conseils juridiques au HCR en Europe du Nord, a contribué à la recherche à l'Institut des droits de l'homme de l'Université d'Islande et à l'élaboration de politiques pour le compte du gouvernement islandais et de l'Association du barreau islandais. Devant la Nordic Alliance for Clinical Genomics, Hrefna a fait des présentations sur les questions juridiques et éthiques concernant le consentement et les résultats secondaires dans les tests génétiques, ainsi que sur le cadre juridique islandais. Elle est actuellement membre du conseil d'administration de Nordic Per Med Law, un réseau nordique qui travaille sur les lois et les législations relatives à la médecine moderne. Entre l'Université de Copenhague et l'Université d'Islande, elle a enseigné l'utilisation de la génétique et d'autres données de santé dans les technologies émergentes, la santé et les droits de l'homme et le droit de la protection sociale. Traduit avec www.DeepL.com/Translator (version gratuite)
Calvin Ho
University of Hong Kong
Hong-Kong
Dr Calvin Ho is Associate Professor with the Faculty of Law of The University of Hong Kong, Co-Head of the Accountability Policy Task Team of the Global Alliance for Genomics & Health, and a member of the Ethics Review Board of Médecins Sans Frontières (Doctors without Borders). He was the co-Head (from 2014-2019) of the World Health Organization Collaborating Centre on Bioethics in Singapore and have also served on national advisory committees on medical ethics, transplantation and genetic testing of the Ministry of Health of Singapore. Calvin’s research interests are in regulatory governance and biomedical law and ethics, with focus on emergent technologies (particularly data analytics and AI). He is a co-editor of Bioethics in Singapore (World Scientific, 2010) and Genetic Privacy (Imperial, 2013), the author of Juridification in Bioethics (Imperial, 2016) and an author of WHO Guidelines on Ethical Issues in Public Health Surveillance (World Health Organization 2017).
Chih-hsing Ho
Academia Sinica
Taïwan
Pilar Nicolás Jiménez
University of the Basque Country
Espagne
Academic background:
Degree in Law (University Complutense of Madrid), PhD in Law (University of Deusto, Bilbao).
Current position:
Permanent Senior research fellow. Public Law Department. Faculty of Law. University of the Basque Country. Spain. Member of the Chair in Law and the Human Genome, University of the Basque Country.
Current teaching:
Graduate level: Criminal Law in the Faculty of Law of the University of the Basque Country.
Postgraduate level: Biolaw in Master Programs (several Spanish and Latinoamerican universities).
Research:
Participation in several research projects supported by public institutions at national and international levels related to health and genetic data protection, patient’s rights, biobanks, personalized medicine or cross border health care.
Publications:
http://orcid.org/0000-0003-4166-5941
Other activities:
Member of the Ethics Committee of the Instituto de Salud Carlos III (Ministry of Science and Innovation. Spain) and of the Ethics Committee of the University of the Basque Country. Member of the Scientific External Committee of the National Platform of Biobanks (Instituto de Salud Carlos III). Member of the Ethics and Governance Committee of the International Cancer Genome Consortium. Chair of the Legal and Ethical Advisory Board of the Rare Anaemias Disorders European Epidemiological Platform. Member of the ELSI WP of the European 1 Million Genomes Initiative.
She has collaborated with the Spanish Ministry of Science and Innovation in the preparation of the Spanish Law 14/2007 on Biomedical Research and of the Royal Decree approved on 18 November 2011 on biobanks.
Kazuto Kato
Osaka University
Japon
Kazuto Kato, Ph.D., is Professor of Biomedical Ethics and Public Policy at the Graduate School of Medicine, Osaka University. He is also a Project Professor of the Institute for Integrated Cell-Material Sciences (iCeMS) at Kyoto University. He has a PhD degree in developmental biology from Kyoto University. After finishing postdoctoral research at the University of Cambridge with Professor John Gurdon, he started to work in the interface between bioscience and society, focusing on ethical and social issues of genomics and stem cell research. Prof. Kato is a member of various international projects/academic societies such as Research Ethics Committee, RIKEN Center for Developmental Biology (CDB) and Ethics and Policy Committee, ICGC (International Cancer Genome Consortium). In 2010, he was appointed as a member of the Expert Panel on Bioethics of the Council for Science and Technology Policy (CSTP) of the Cabinet Office, Japan. Currently, he leads a research group, the Research Unit of the ELSI (ethical, legal and social implications) of genomics, with the funding from the MEXT.
Hannah Kim
Yonsei University
République de Corée
Hannah Kim is a research assistant professor at the Department of Medical Law and Ethics, Division of Medical Humanities and Society, College of Medicine, at Yonsei University, South Korea. She studied medicine and holds a PhD in healthcare law from Yonsei University. She worked as a Fellow at Department of Medical Law and Ethics at Yonsei University in 2016 –2017. She was a member of Advisory Committee for DTC-GT under the Ministry of Health and Welfare in South Korea. She worked as a visiting scholar at the Centre of Genomics and Policy in 2018. 6. – 2019. 5.
Since 2011, she has focused on ethical, legal and social issues surrounding gene editing, direct-to-consumer genetic testing, 3D bioprinting technology, precision medicine, intellectual property rights, universal health coverage, genetic discrimination, data sharing and privacy, from several ethical, legal and social implications (ELSI) projects.
Juan Alberto Lecaros
University of Desarrollo
Chili
Dr. Lecaros is an Associate Professor and researcher at the Bioethics Center of the Faculty of Medicine, University of Desarrollo and a lawyer at the University of Chile (Santiago, Chile). He is also the Director of the Observatory of the Bioethics and Law. He obtained a Master in Bioethics at the Borja Institute of Bioethics, Ramon Llull University (Barcelona, Spain), and a PhD in Philosophy, Complutense University of Madrid (Madrid, Spain). Dr. Lecaros received the Award for Excellence in Bioethics Manuel Velasco Suárez 2012, PAHEF/OPS. He is a co-founder of the International Network of Biolaw at Santiago, Chile, an international academic organization that benefits from the epistemological support and participation of world-renowned scholars and specialists on biolaw and bioethics.
His research group focuses on legal innovation in the area of biomedicine and biotechnology, with special emphasis on bench-based science and translational research. In the last five years, his research has been focused on regulatory proposals to improve and develop national regulations on biomedical research. In 2014, his group published a report with proposals to improve the regulation of the biomedical research law and update the technical standard in clinical research. This report was a collaborative and interdisciplinary work associated with the National Drug Authority (ANAMED, ISP). In 2016, his group published a report with regulatory proposals to use human biological specimens and biobanks for research and, in 2018, a report with regulatory proposals for regenerative medicine for Chile. Currently, his group is preparing a proposal for legal regulation and technical standards in research biobanks for the Center for Translational Biotechnology, a platform created National Agency of Research of the Ministry of Science, Chile. In addition, he collaborates with the Chilean Council for Transparency on recommendations to use health data in health emergencies and its secondary use for research.
Observatory of Bioethics and Law at the Institute of Science and Innovation in Medicine, Faculty of Medicine, University of Desarrollo: https://medicina.udd.cl/icim/areas-de-investigacion/#!/modal/9406/observatorio-de-bioetica-y-derecho
Timo Minssen
University of Copenhagen
Danemark
Timo Minssen is Professor of Law at the University of Copenhagen (UCPH) and the Founder and Managing Director of UCPH's Center for Advanced Studies in Biomedical Innovation Law (CeBIL). His research concentrates on Intellectual Property-, Competition & Regulatory Law with a special focus on new technologies in the pharma, life science & biotech sectors. His studies comprise a plethora of legal issues emerging in the lifecycle of biotechnological and medical products and processes - from the regulation of research and incentives for innovation to technology transfer and commercialization.
At UCPH he leads large interdisciplinary research projects examining legal issues in synthetic biology, precision medicine, biologics/biosimilars & large research infrastructures, as well as a large collaborative research program that is funded by the Novo Nordisk Foundation. He is scientific advisory board member of the Copenhagen Centre for Regulatory Sciences and steering committee member of the Danish Association for the Protection of Industrial Property. At CeBIL, Timo collaborates with an international network of renowned core-partners including inter alia the University of Cambridge, Harvard Law School and Harvard Medical School. Timo has also been the legal expert advisory board member of EU Commission studies of the pharmaceutical sector.
Palmira Granados Moreno
McGill University
Mexique
Palmira Granados Moreno is an academic associate at the Centre of Genomics and Policy of McGill University, where she has worked for the past 7 years. She is a Mexican lawyer specialised in intellectual property and new technologies and a Doctor of Civil Law candidate at the Faculty of Law at McGill University under the supervision of Professor Richard Gold. Her research focuses on the interface of intellectual property and medicine and access to healthcare; commercialisation, valorisation, and open science; genetic discrimination; ethics and genetics; public-private partnerships; and medical devices regulation. Prior to working at the Centre of Genomics and Policy, she was a member of the International Expert Group of the Innovation Partnership, the New Researchers Group of VALGEN, Creative Commons Mexico, and the Free Software Foundation. She also worked at a Mexican law firm in the area of intellectual property and information technology and was a lecturer at renowned university in Mexico.
Katharina Ó Cathaoir
University of Copenhagen
Danemark
Katharina Ó Cathaoir, PhD, is Assistant Professor in Health Law at the Faculty of Law, University of Copenhagen, where she researches in Danish and global health law, with a focus on the implications of Big Data for the human rights of patients. Katharina contributes to several interdisciplinary projects spanning obesity provision, genomic medicine, data sharing and use of algorithms in treatment and research. Her research analyses to what extent legal norms, like informed consent and the right to data protection, are implicated and in need of renegotiation in light of emerging health technologies.
https://jura.ku.dk/english/staff/research/?pure=en/persons/472315
Margaret Otlowski
University of Tasmania
Australie
Margaret is Professor of Law at the University of Tasmania (formerly Law Dean), Deputy Director, Centre for Law and Genetics and Pro Vice Chancellor, Culture and Wellbeing. She has longstanding experience in health law and ethics, publishing extensively in the field. She led an empirical interdisplinary research project funded by the Australian Research Council exploring the occurrence of genetic discrimination in Australia (2002-2004). She has been engaged by Commonwealth and State governments and agencies as consultant and member for various national committees including the National Health and Medical Research Councils Human Genetic Advisory Committee (2009-2015). She has held quasi-judicial roles including as member of the Tasmanian Anti-Discrimination Tribunal and is the Chair of the Australian Genetic Non-Discrimination Working Group. She is a Fellow of the Australian Academy of Law.
Athira P.S.
Ntl Univ. of Adv. Legal Studies
Inde
She was awarded PhD in Law from the Department of Law, University of Kerala, for her doctoral thesis on "Stem Cell Research: Legal Dimensions". She completed her LL.M. in Constitutional and Administrative Law on merit scholarship, securing First Rank with Distinction from the Department of Law, University of Kerala and her LL.B with Second Rank from the University of Kerala. She was awarded the Sachivothama Shashtiabdapurthi Memorial Prize Gold Medal, Justice Muthunayagom Memorial Prize, Justice T Krishnan Nair Memorial Gold Medal Endowment, Justice M. Fathima Beevi Endowment and Malloor K. Govinda Pillai Gold Medal for Law from the University of Kerala.
She has been an invited speaker and delegate in many international forums such as the International Research Conference held under the aegis of the National University of Singapore and the 49th Asia-Pacific Academic Consortium for Public Health Conference (APACPH) 2017, held in Yonsei University International Campus, Korea. She has to her credit many publications in reputed International and National Law Journals. She has participated as resource person in training programmes as well as international and national seminars conducted by organizers such as the Institute for Shipboard Education and University of Virginia, Ministry of Electronics and Information Technology, Vellore Institute of Technology School of Law, Department of Law, University of Kerala, School of Legal Studies, CUSAT among others. She has also presented peer-reviewed papers in international and national seminars and has attended UGC refresher courses and several faculty development programmes.
She had participated in moot courts during her graduation and won prizes for presentation as well as memorials in international and national Moot court competitions.
During her tenure in NUALS, she has organized many academic programmes including international and national seminars, workshops, essay competitions, IP-specific talk shows etc, as the Director of the Centre for Intellectual Property Rights. Even prior to that she had organized the first of its kind national seminar in Kerala, on the legal status and rights of sexual minorities.
She is a member of the NUALS Research Committee and is a Research Guide in the University. She is a member of the UG Board of Studies, and also been in the organizing committees of many institutional programmes such as Annual Convocations and Moot Court Competitions.
As the Faculty-in-charge of Alumni NUALS, she had organized the First Alumni Meet of the University in November, 2017.
Her areas of interest include Intellectual Property Law, Health and Bioethics, and Equality of Rights.
Anya Prince
University of Iowa
États-Unis
Professor Prince’s teaching and research interests explore the ethical, legal, and social implications of genomic testing, with particular focus on genetic discrimination and privacy rights, the intersection of clinical and research ethics, and insurance coverage of genetic technologies and interventions. Professor Prince is a former Visiting Assistant Professor of Law at Indiana University’s Robert H. McKinney School of Law, where she taught New Genetics: Ethical, Legal and Policy Issues and Employment Law. She has published a variety of articles in legal, bioethics, and medical journals, including the American Journal of Bioethics, Journal of Law, Medicine, and Ethics, and Genetics in Medicine, and she has presented and been an invited speaker at conferences across the country. She was recently awarded a Pathway to Independence Award (K99/R00) from the National Human Genome Research Institute to examine the use of genetic information by life, long-term care, and disability insurers.
Before joining the legal academy, Professor Prince served as a Post-doctoral Research Fellow at the UNC Center for Genomics and Society (CGS) in the Department of Social Medicine at UNC-Chapel Hill School of Medicine as well as an intern on the UNC Hospital Ethics Committee. In 2015, she received the UNC’s Postdoctoral Award for Research Excellence and received additional funding from the Skadden Foundation for her work on the hospital ethics committee. In addition to her research role, Professor Prince has also worked as a Skadden Fellow and Staff Attorney at the Cancer Legal Resource Center in Los Angeles, California.
Professor Prince is a graduate of University of California, Los Angeles (cum laude, B.A.) and Georgetown University (M.P.P. and J.D.)
Yernar Shalkharov
Seikhan Scientific Group
Kazakhstan
Dr. Yernar Shalkharov obtained a Ph.D. in Law at the International Kazakh-Turkish University. During his doctorate, Dr. Shalkharov investigated some aspects of the rights and obligations of medical workers involved in genomics. He previously obtained a master's in law and molecular biology at the Kazakh National Pedagogical University, for which his thesis focused on extremophiles as elements of shadow biospheres. Currently, Dr. Shalkharov is the Director of the Genomic Research Department at Kainar Consulting, a member of the World Association of Medical Law, and a Senior Lecturer teaching “International Genomics” at the South-Kazakhstan University. His research interests focus on the field of genomic law, medical law and bioterrorism.
Lingqiao Song
McGill University
Chine
Ms. Lingqiao Song, B.Sc, LL.M., Ph.D. student, Chinese Lawyer, is an Academic Associate at the Center of Genomics and Policy, McGill University. She serves as a member of Institutional Review Board of Faculty of Medicine, McGill University. She has a variety of research topics ranging from on Ethical, Legal, Social Implications (ELSI) of gene technology, genetic discrimination, genomic data sharing, to the Chinese regulatory framework of genetic privacy.
Nguyễn Thái Cường
Ho Chi Minh City University
Viet Nam
Dr. Nguyễn Thái Cường (PhD Toulouse, Brighton, Munchen) is a Lecturer at the HCMC University of Law. He was awarded a Ph.D. from the University of Toulouse, France in 2016 and was a Scholar at the Max Planck Institute for Innovation and Competition, Germany, in 2015.
His research focuses on intellectual property, copyright law, patent law, contract law and Arbitration. He is a correspondent for the GRUR International Journal and a peer reviewer for the Science & Technology Development Journal (STDJ) (1859-0128), Vietnam National University (VNU), Vietnam. He is a member of the Bioethics Council, VNU and Head of research, sponsored by Ministry of Education of Vietnam, hosted by Ho Chi Minh University of Law. Dr Nguyễn is a visiting Professor at University of Toulouse, France and at the International University, VNU.
Augusto Valderrama
Universidad de Los Andes (Bogotá)
Colombie
Dr. Augusto Valderrama is a Professor and the Scientific Research Director in the Faculty of Health at the University of Santiago de Cali (Colombia). Dr. Valderrama holds an M.Sc. in basic medical sciences (Immunology and Molecular Biology), a Ph.D. in biomedical sciences (Human Genomics and Public Health), and was a Postdoc, Fulbright visiting scholar, at the Georgia Institute of Technology (USA).
Most of his 20-year experience as a biomedical researcher focuses on translational research for neglected infectious and noninfectious diseases in underserved populations, with a particular interest in the implementation of cutting-edge technologies to foster quality of life and industrial development. His expertise also focuses on the convergence of biomedical sciences with the community and public health sciences, in areas like molecular epidemiology or community precision medicine. He has been a member of multiple national (Colciencias) and international (USA, Peru, Brazil, Mexico) evaluation panels, and an invited editor and reviewer of well-renowned international scientific publications (e.g., PLOSone, BMC Genomics). Dr. Valderrama has also been a longtime collaborator on Chocogen, a research project that aims to facilitate genetic studies on a predominantly Afro-Colombian population (https://www.chocogen.com/ ). Dr. Valderrama has a long-standing interest in legal and ethical questions regarding the use of genetic information in medicine and research, and is interested in promoting the development of a legal framework to prevent genetic discrimination in Colombia.
Ine Van Hoyweghen
KU Leuven
Belgique
Ine Van Hoyweghen is Research Professor at the Centre for Sociological Research (University of Leuven) where she directs the Life Sciences & Society Lab. She is a leading and internationally-renowned researcher in sociology of biomedicine, science and technology studies (STS), and sociology of health care innovation. Her main research activities concentrate on the social implications of biomedicine (genomics, digital health, personalised medicine). She published among other issues on topics such as genetic discrimination, behaviour-based personalisation, solidarity in Personalised Medicine, EU digital health innovation policies, health care delivery of genetic testing, epigenetics, citizen science, and global health. She is the PI of the project “Postgenomic Solidarity. European Life Insurance in the Era of Personalised Medicine”, for which she received a prestigious Odysseus grant by the Research Foundation Flanders (FWO). Van Hoyweghen is the author of many books, including Risks in the Making. Travels in Life Insurance and Genetics (Amsterdam University Press, 2007), Making Global Health Care Innovation Work. Standardization and Localization (2014, Palgrave, with Engel, N. & Krumeich, A.), Citizen Science (2019, with Gijsel, L. & Huyse, T.) and Shifting Solidarities. Trends and Developments in European Societies (2019, Palgrave, with Pulignano, V.). Her research has been supported by the Research Foundation-Flanders (FWO), the Netherlands Organisation for Scientific Research (NWO), the European Commission (FP7, Horizon 2020, COST), and other bodies. Many of these research projects did include collaborations across disciplinary boundaries. Van Hoyweghen is (founding) Board Member of the Leuven Institute for Genomics and Society (LIGAS) and Chair of the Leuven Interdisciplinary Platform for the Study of the Sciences (LIPSS). She is Alumnus Member of the Young Academy of the Royal Flemish Academy of Belgium for Science and the Arts (KVAB), Member of the Belgian Consultative Committee on Bioethics (2019-2023), and (founding) President of the Belgian Science, Technology & Society Network (www.bsts.be).
Torsten Voigt
RWTH Aachen University
Allemagne
Torsten H. Voigt is a university professor of sociology and the chair of technology and diversity at RWTH Aachen University, Germany. His research interests lie at the interface of science and technology studies, medical sociology, and social theory. He is particularly interested in biotechnological innovations---specifically medical and forensic genetics as well as neuroscience---and how they relate to and are influenced by societal norms and values. He has published extensively on the societal and ethical implications of DNA testing.
Chisato Yamasaki
NIBIOHN
Japon
Chisato is a research coordinator of the Center for Rare Disease Research, National Institutes of Biomedical Innovation, Health and Nutrition (NIBIOHN), Osaka, Japan. She has former experience as a research associate at the Department of Biomedical Ethics and Public Policy, Prof. Kazuto Kato's Lab. at Graduate School of Medicine, Osaka University, and as a molecular biologist and dry database curator. She was involved in the bioethics issues related to human genome research and now works on an intractable disease patient database for Japanese patients. Her research focuses on the following topics:
i) laws and regulations for human genome research;
ii) database policies for data-sharing (data access and uses) of human gene/variation/phenotype databases;
iii) Ethical, Legal, Social Implications (ELSI) issues related to human genomes and genetics in general;
iv) intractable disease patients database-related issues.
Christian Byk
France
Bartha M. Knoppers
Canada
Erisa Mwaka
Ouganda
Woodlyn Orvil
Canada
Misha Rashkin
États-Unis
Mark A. Rothstein
États-Unis
Jacques Simard
Canada
Rob Sladek
Canada
Katherine Wilemon
États-Unis
Yvonne Bombard
University of Toronto
Canada
Dr. Bombard is an Associate Professor at the University of Toronto in the Institute of Health Policy Management and Evaluation and a Scientist at the Li Ka Shing Knowledge Institute of St. Michael’s Hospital.
Dr. Bombard is an international authority on genetic discrimination. She pioneered research on genetic discrimination when she conducted the first empirical study on genetic discrimination in Canada. Dr. Bombard’s landmark research on genetic discrimination provided crucial evidence for international clinical practice guidelines and provincial and federal legislation on genetic discrimination in Canada. Her work and testimonies to the Parliament of Canada’s Senate helped pass the historic Genetic Non-Discrimination Act of 2017. For these contributions, Dr. Bombard was awarded the inaugural recipient of the Maurice McGregor Award for Demonstrated Excellence and Leadership Potential from the Canadian Agency for Drugs and Technologies in Health (CADTH) and also received a ‘Rising Star’ award from CIHR’s Institute of Health Services and Policy Research in 2011.
Dr. Bombard’s current research focuses on evaluating the adoption of new genomic technologies in clinical practice. She also conducts public and patient engagement research to advance health technology assessment and health service delivery. Dr. Bombard is active in numerous international policy advisory committees; her research informs policy development in this area. This program of research is supported by a CIHR Foundation grant; she also holds a CIHR New Investigator Award.
Dr. Bombard holds a Fellowship from Yale University (Health Policy), a Fellowship from the Memorial Sloan-Kettering Cancer Center (Cancer Genomics) and a Fellowship from the University of Toronto (Health Services Research).
Charles Dupras
University of Montreal
Canada
Charles Dupras, B.Sc., M.Sc., Ph.D. is a postdoctoral fellow at the Center of Genomics and Policy (CGP) at McGill University. He completed a master's degree in molecular biology at INRS-Institut Armand-Frappier, then completed a doctoral degree in bioethics at the University of Montreal. He was recently awarded a three-year fellowship (2017-2020) by the Canadian Institutes of Health Research (CIHR), for pursuing his research on the translation of emerging knowledge in epigenetics.
Epigenetics is an emerging field of study focusing on the biological mechanisms responsible for regulating gene expression. Epigenetic modifications have been associated with physico-chemical (e.g., pollutants) and psychosocial (e.g., family context, social adversity) environments to which people are exposed during their development, and with the development of many diseases later in life. Charles is interested by the ethical, legal and social implications of epigenetics. He examines, among other things, the impact of epigenetics on nature vs nurture representations, and questions of environmental and social justice.
As part of his work at the CGP, Charles is exploring Canadian laws and public policies potentially applicable to – or to be amended to accommodate – recent findings about epigenetic mechanisms, such as DNA methylation. The main objective is to ensure that Canadian regulations, such as the recent Genetic Non-Discrimination Act (2017), or existing guidelines for the ethical conduct of genetic research (e.g., data sharing and protection of privacy), apply consistently and justifiably to epigenetic information.
Other ongoing projects include empirical studies of the ethical and social acceptability of implementing non-invasive prenatal testing (NIPT) in Canada. Charles sits on the Executive Committee of the new Canadian Journal of Bioethics. He is also an active member of the Bioethics Workgroup of the International Human Epigenome Consortium (IHEC).
Maria Claudia Lattig
Universidad de Los Andes
Colombie
Dr. Maria Claudia Lattig is an Associate Professor in the Department of Biological Sciences of the Faculty of Sciences at the Universidad de Los Andes. Professor Lattig has a background in Microbiology and Genetics. She did her undergraduate studies at the University of California Santa Barbara. She completed a master's degree at the Pontificia Universidad Javeriana in Bogotá and a Ph.D. in Genetics at George Washington University in a joint program with the National Institutes of Health (NIH) in the United States. Professor Lattig's research focuses on searching for pathogenic variants responsible for Mendelian diseases and neuropsychiatric diseases such as those related to autism spectrum disorders. Additionally, she is actively investigating genetic risk factors and pharmacogenomic variants that may be involved in response to medications associated with major depressive disorders. As a diagnostic laboratory founder and a researcher in human genetics in Colombia, she is concerned about the potential impact of misusing genetic information on health insurance and the workplace and the importance of creating regulations specifically on the topic in Colombia.
Audrey Lebret
Copenhagen University
Danemark
Le Dr Audrey Lebret étudie les interactions entre les nouvelles technologies, la biomédecine et les droits de l'homme, au Centre d'études avancées en droit de l'innovation biomédicale (CeBIL) de l'université de Copenhague. Elle travaille actuellement sur AI@Care, un projet de collaboration avec des spécialistes des données visant à identifier les sources de biais et de discrimination dans les algorithmes de soins de santé, dans le but d'élaborer des lignes directrices pour les prévenir. Elle étudie en particulier la notion de discrimination en droit international et comparé en tant que contraintes juridiques jouant sur la conception et l'utilisation des algorithmes. Parmi d'autres sujets de droit international et comparé, ses recherches antérieures ont porté sur les interactions entre les droits de l'homme dans les normes de transplantation d'organes. Elle a également travaillé sur la prise de décision en fin de vie, le droit d'essayer des traitements expérimentaux en Europe et aux États-Unis, les technologies de reproduction, la vie privée et l'internet, le mariage entre personnes du même sexe, etc. Audrey a fait des études de droit et de gestion. Elle a obtenu son doctorat en droit à l'université Panthéon-Assas (Centre des droits de l'homme de Paris). Elle enseigne, entre autres, la santé et les droits de l'homme et la Cour européenne des droits de l'homme.
Laëtitia Michou
Laval University
Canada
Dr. Michou completed her medical studies at l’Université d’Angers, her Rheumatology residency at l’Université Denis-Diderot-Paris VII and her PhD in Human Genetics at l’Université René-Descartes-Paris V (France). She had in parallel completed a two-year clinical fellowship in fragility bone diseases at the centre Viggo Petersen, Rheumatology Department, Lariboisière hospital, Assistance publique-Hôpitaux de Paris, France.
Dr. Michou is a clinical investigator at the Centre de Recherche du CHU de Québec-Laval University, rheumatologist at the CHUL, and associate professor at Laval University’s School of Medicine, Quebec. Dr. Michou is the principal investigator of several academic research projects in the field of rheumatic diseases, mainly funded by the Fonds de recherche du Québec-Santé, Canadian Institutes of Health research, the Arthritis Society, and the CHU de Québec Foundation. She supervises master and PhD students, as well as the clinical research projects of rheumatology and internal medicine residents.
She is the author or coauthor of 53 scientific refereed articles, over 100 oral or poster communications in scientific congresses, and approximately 30 articles of continuing medical education for rheumatologists or family doctors.
Dr. Michou’s research interests are human genetics of bone and joint diseases, particularly Paget’s disease of the bone, rare bone diseases, osteoporosis, Dupuytren’s disease and rheumatoid arthritis. She is the manager of the Biobank and Bank of Data for the Study of Heritable Musculoskeletal Diseases and co-manager of the Biobank and Repository Data for Systemic Autoimmune Rheumatic Diseases.
Yves Moreau
University of Leuven
Belgique
Dr. Yves Moreau is a concerned scientist doing research at the interface between artificial intelligence and genetics. He is actively pushing back against the creeping development of mass surveillance technology, particularly the abusive deployment of forensic DNA databases. He is also engaged in reflecting on how technological advances are shaping our society and how to avoid that technology further exacerbates inequalities or leads us to an ecological collapse. Furthermore, he encourages scientists and engineers to participate more actively in the social debate, beyond their strict expertise but in a reasoned manner.
Kaori Muto
University of Japan
Japon
Kaori Muto, Ph.D, is the professor of the Department of Public Policy, Human Genome Center, the Institute of Medical Science, The University of Tokyo. She received B.A. in Human Sciences (1993), M.A. in Sociology (1995) from Keio University, and Ph.D. in International Community Health (2002) from The University of Tokyo. After working as a research fellow at the Department of Community Health, Brown University from 2000 to 2002, she served as lecturer at the Department of Health Sciences, Shinshu University from 2002 to 2007. She joined Human Genome Center as an associate professor in 2007 and became professor in 2013. She has been working in the field of biomedical ethics and medical sociology. Her research interests include ethical, legal and social implications and patient and public involvement/engagement. She serves on the ethics committee of the International Society for Stem Cell Research, chairs the coordinator development committee of the Japan Society of Human Genetics, and a board member of the Japan Association of Bioethics. She has also served as a member of the Expert Meeting for COVID-19 in the Government of Japan.
Akiko Nagai
University of Tokyo
Japon
Akiko Nagai is Project Assistant Professor at the Department of Public Policy, Human Genome Center, the Institute of Medical Science, the University of Tokyo, where she researches in ethical, legal and social implications (ELSI) related genome research and genomic medicine. She studied public health and holds a Ph.D. in medical science from Interdisciplinary Graduate School of Medicine and Engineering, University of Yamanashi. Her research interests include the ELSI surrounding genetic testing, biobanks, and data sharing.
Azhar Nartai
Seikhan Scientific Group
Kazakhstan
Michael Pepper
University of Pretoria
Afrique du Sud
Michael Pepper est directeur de l'Institut de médecine cellulaire et moléculaire, directeur de l'unité du SAMRC pour la recherche et la thérapie des cellules souches et professeur de recherche au département d'immunologie de la faculté des sciences de la santé de l'université de Pretoria. Il est également professeur associé au département de médecine génétique et de développement de la faculté de médecine de l'université de Genève, en Suisse. Il a obtenu son MBChB en 1982 à l'Université du Cap, et s'est installé à Genève en 1986, où il a obtenu son doctorat en 1990, son diplôme de médecin en 1992 et son diplôme de médecin privé en 1997. Il est retourné en Afrique du Sud en juillet 2004.
Michael a beaucoup travaillé dans le domaine de la biologie moléculaire cellulaire à orientation clinique (translationnelle), et ses intérêts portent sur les cellules souches et le génome humain ainsi que sur leurs implications éthiques, juridiques et sociales (ELSI). Il assiste le ministère national de la santé dans la législation concernant les tissus humains et en particulier les thérapies cellulaires, et il est président et président du conseil d'administration de l'Association sud-africaine des banques de tissus. Michael est président d'une étude de consensus sur l'ELSI de l'édition du génome humain qui est menée pour l'Académie des sciences d'Afrique du Sud.
Izen Ri
University of Tokyo
Japon
Izen Ri (Ph.D.) is an assistant professor at the Department of Public Policy, Human Genome Center, the Institute of Medical Science, the University of Tokyo. She obtained her Ph.D. in Interdisciplinary Information Studies from the University of Tokyo in 2020. She was a research fellow, at the Japan Society for the Promotion of Science (JSPS) in 2016-2019, and a Project Research Fellow at the Department of Public Policy in 2019-2020. Her background is in medical sociology and bioethics. Her main interests include patient and family communication surrounding various medicine and medical investigation. She has been involved in social science research about assisted reproductive technology, birth cohort studies, and hereditary disease (hereditary breast and ovarian cancer syndrome: HBOC). Currently, she also engages in research activities on the impact on our society of advances in genome analysis, and ethical issues in research development of early disease prediction and preventive interventions, as well as efforts to reflect the perspectives of patients and the public.
Kshitij Kumar Singh
University of Delhi
Inde
Kshitij Kumar Singh is an Assistant Professor at Campus Law Centre, Faculty of Law, University of Delhi. He is CeBIL Visiting Scholar (Spring, 2022) at the University of Copenhagen, Faculty of Law. He earned his LL.M. and PhD degrees from Banaras Hindu University and received Canadian Commonwealth Scholarship Asia-Pacific 2010. As a Visiting Researcher, he visited the Faculty of Law, University of Western Ontario, Canada, in 2009 and 2010. His primary area of interest is biotechnology law, particularly ethical, legal and policy issues relating to biomedical technology (especially human genetics, genomics, precision medicine and antimicrobial resistance). He published extensively on patenting of agricultural biotechnology and biomedical technology in the light of open and collaborative approaches with esteemed publishers including Oxford, Edward Elgar, Cambridge, Elsevier and Springer Nature. He emphasizes a pragmatic approach to law that addresses the concerns of various stakeholders in the biotechnology domain through inclusion and participation. His current interest is “equity and diversity in science” (research pertaining to human genetics and genomics).
Jane Tiller
Monash University
Australie
Jane Tiller (LLB(Hons)/BSc/MGenCouns) is an Australian lawyer and genetic counsellor with a background in corporate law and a keen interest in the regulatory and ethical aspects of genomics. She is a founding member of the Australian Genetic Non-Discrimination Working Group and gave evidence to the recent Parliamentary Inquiry into the Life Insurance industry. Jane currently undertakes a number of diverse roles, including Ethical, Legal and Social Adviser in Public Health Genomics at Monash University and Senior Project Coordinator - Policy and Ethics, with Australian Genomics. She has conducted numerous research studies regarding genetic discrimination in life insurance, and has recently commenced a research project, funded by the Australian Government Medical Research Futures Fund, monitoring the effectiveness of the genetics and life insurance moratorium. Jane is also undertaking her PhD.
Ma'n Zawati
McGill University
Canada
Ma’n H. Zawati (LL.B., LL.M., Ph.D. (D.C.L.)) est Professeur Adjoint à l'Université McGill ainsi que le Directeur exécutif du Centre de génomique et politiques du Département de génétique humaine. Il est également membre associé de l’Unité d’éthique biomédicale de McGill. Ses recherches portent sur les dimensions juridiques, éthiques et politiques de la recherche en santé et des soins cliniques, avec un intérêt particulier pour les biobanques, le partage de données, la responsabilité professionnelle et l'utilisation de nouvelles technologies (ex. les applications mhealth, WGS, WES) dans les contextes clinique et de recherche. Le Dr Zawati est financé par Génome Canada, Génome Québec et l'Institut de recherche Terry Fox. Son travail est interdisciplinaire et rassemble des perspectives issues du droit, de l’éthique, de la bioinformatique, de la génomique et des politiques. Il intervient fréquemment sur diverses questions cruciales et d’actualités, dans les domaines des soins de santé et des biosciences. Il a participé à plus de 100 conférences, symposiums et réunions internationaux et a partagé son expertise avec des universités, des comités d'éthique de la recherche et des cabinets d'avocats. Le Dr Zawati a publié plus de 13 chapitres de livres et plus de 45 articles évalués par des pairs, dans des publications majeures telles que le Nature Reviews Genetics, le Canadian Medical Association Journal, le Journal of Law and the Biosciences, le Journal of Medical Genetics, et le Journal of Law and Health de McGill. En 2015, il a reçu la bourse Queen Elizabeth II Diamond Jubilee (avec séjour à l'université d'Oxford) et a été nommé délégué de la Société royale du Canada pour le Symposium international des Jeunes professionnels de l'année de l'IAP (IAP Young Scientists of the Year international symposium). En 2014, l'Association du Jeune Barreau de Montréal l'a nommé l'un de ses avocats de l'année.
Zier Zhou
University of Ottawa Heart Institute
Canada
Zier is completing her MSc in biochemistry at the University of Ottawa Heart Institute. Previously, she learned about life sciences during her undergraduate degree at Queen’s University. Her research background has focused on non-coding RNA expression in common diseases such as Alzheimer's and atherosclerosis. Zier’s involvement with the Ottawa Science Policy Network and Canadian Science Policy Centre has further contributed to her interests in exploring various connections between science and society. She is excited to join the GDO and contribute to its ongoing research and advocacy for health equity in the era of genomic medicine.