GDO Team

Mei-Chen Chang holds a bachelor degree in Social Science from the Ritsumeikan Asia-Pacific University in Japan. She is Office Assistant to professor Yann Joly at the Centre of Genomics and Policy (CGP).

Abby is completing her B.Sc. At McGill University, majoring in Pharmacology with a minor in Philosophy. She has a keen interest in the ethical implications of genetic technologies. Currently interning with the Genetic Discrimination Observatory (GDO) at the CGP, Abby’s work revolves around genetic discrimination, equity and stigma.

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 access to healthcare, genetic discrimination, and equity in data sharing. She holds a PhD in International Law from the Graduate Institute for International and Development Studies, a JD from Emory University School of Law, an LLM in Global Health Law from Georgetown University, and an MPhil in Psychology from the University of Cambridge, UK. 

Diya is the Associate Director of the Genetic Discrimination Observatory and the Global Alliance for Genomics and Health (GA4GH) Sr. Policy Analyst at the CGP.

Research interests: right to health; international law; equity; non-discrimination; health policy

Yunhe Xue is currently pursuing the doctorate degree at the Université de Montréal at the faculty of law under the supervision of Prof. Pierre Larouche, with a focus on data sharing regulation and data governance. She has obtained the master of law at UdeM and the bachelor of law at East China Normal University in Shanghai. She’s always been interested in multi-disciplinary and interdisciplinary research on law and health, law and technology as well as law and economics, etc. Before joining the CGP, Yunhe also worked as a research assistant at the Institute for Studies on Artificial Intelligence and Law at Tsinghua University for more than two years.

Yann Joly, Ph.D. (DCL), FCAHS, Ad.E. is the Director of the Centre of Genomics and Policy (CGP) at McGill University. He is a James McGill Professor at the Faculty of Medicine and Health Sciences, Department of Human Genetics. Prof. Joly is also an associate member of the Bioethics Unit and at the Law Faculty at McGill. He was named advocatus emeritus by the Quebec Bar in 2012 and Fellow of the Canadian Academy of Health Sciences in 2017.

In 2021 he received, the Canadian Science Policy Centre, Science Policy Trailblazer Award. 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 Co-Lead the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health (GA4GH). He was Chair (2017–2019) 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 created the first international genetic discrimination observatory (GDO  https://gdo.global/en/gdo-description) in 2018. He has published his findings in over 200 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.

After obtaining his first bachelor’s degree in Phys. Ed. from the Université de Montréal, François decided to make his dream come true by pursuing a career as a singer/actor in musical theatre and the record industry. Among his achievements, he was part of the distribution of Les Misérables (Montreal, Canada, Paris) and obtained a gold record.

In the mid-1990s, the Internet entered our lives and François was fascinated by this phenomenon. He therefore enrolled in Computer Science at UdeM. After obtaining his second bachelor’s degree, he made his first steps in web development as part of Professor Bartha M. Knoppers' research team. He turned to databases to capture, structure and chunk data in order to give it a form of intelligence. He then quickly realized that the main challenge in developing a web interface is to display data in an aesthetic and intuitive framework. Content is always the sinews of war.

In 2004, he founded his company and has since collaborated with multiple research groups at the University of Montreal, McGill and Concordia, whose work focused mainly on health and law. He considers his work as his social contribution to research.

In 2023, his son Matthew, a computer science graduate from Concordia University (2021), joins the team. The company's continuity, imbued with the same entrepreneurial culture, is now assured.

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.

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 BEVIERE-BOYER is a lecturer in private law at the University of Paris 8 Law Faculty and Deputy Director of the Centre de recherches juridique de droit privé et droit de la santé (EA1581). Her research work focuses mainly on bioethics law, ethics and digital technology. She has written various articles on research, innovation, digital technology, health data, the care relationship, fundamental principles of personal protection, assisted reproduction, pre-implantation diagnosis, organ donation, etc. She has organized several conferences on Big Data, Artificial Intelligence, Digital Sovereignty, Digital Responsibility, Aging, etc., as well as a two-year cycle of conferences on bioethics at the Court of Cassation, which will continue with another cycle of conferences on digital issues. For several years now, she has also been organizing academic exchanges with Chinese universities (conferences, collective works).

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.

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 is an Assistant Professor at the Faculty of Law, University of Iceland and a researcher at WELMA – Centre for Legal Studies in Welfare and Market at the Faculty of Law, University of Copenhagen (UCPH).  In her research Hrefna focuses on statutory requirements for science, ethics and technology, particularly in relation to scientific research in the field of health, the use of health data, research reciprocity and the welfare of research participants and patients. Hrefna’s research has been published in Journal of Law and the Biosciences, Medical Law International and the Cambridge Handbook of Information Technology, Life Sciences and Human Rights. She speaks regularly at conferences, serves as a board member for the Nordic Per Med Law - a network working with legislation for modern medicine, and contributes to various subgroups of the Global Alliance for Genomics and Health. Hrefna is a member of IASC's Justice in the Arctic Working Group and is specifically interested in data governance and research reciprocity in the environmental, societal and cultural context of the circumpolar North.

Prior to academia, Hrefna practiced as an Attorney-at-Law at Réttur - Aðalsteinsson & Partners, a litigation and human rights law firm based in Reykjavík, Iceland. She has contributed to policy making and research of the Icelandic government, the Icelandic Bar Association, and the Human Rights Institute at the Univ. of Iceland. Her professional experience also includes variety of cross-sectoral projects in different regional and country contexts ranging between the archipelago of Svalbard and Tamil Nadu in India. She has held two consultancies with the UNHCR and provided legal advice in the Moria detention camp on behalf of the Council of Bars and Law Societies of Europe via European Lawyers in Lesvos, Greece.

Hrefna holds a PhD from the Faculty of Law, University of Copenhagen which she undertook at the Center for Advanced Studies in Biomedical Innovation Law (CeBIL), MA in Disaster Management from the Faculty of Health and Medical Sciences at UCPH and Mag. Juris and BA in Law from the University of Iceland. She was admitted to the Icelandic Bar Association in 2013. 

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). 

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, 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 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.

Michal Koscik is an expert in health law, technology law, and public health. He currently serves as the Head of the Department of Public Health and as Chair of the Board of Research Ethics at Masaryk University's Faculty of Medicine, holding pivotal roles in academic leadership at one of the largest universities in Central Europe. Additionally, he works as an external lecturer at both the Faculty of Law and the Faculty of Pharmacy, while also leading a research group at the Systemic Risk Institute (SYRI).

Michal's research focus centers around barriers to healthcare and patient access to advanced treatments. As a researcher and contributor to the Central European Advanced Therapy and Immunology Centre (CREATIC), he bridges theory with tangible impact.

Michal holds a Master's degree in Law, a Ph.D. in Legal Theory, and a degree in Economics. He is also an author and co-author of more than 40 research papers, contributing significantly to the academic discourse in his fields of expertise. Furthermore, his participation in over 20 research projects, many of which are international and interdisciplinary, showcases his commitment to pushing the boundaries of knowledge.

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 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 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, 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 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.

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.

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.)

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.

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.

Donrich Thaldar is Full Professor of Law at the University of KwaZulu-Natal, Durban. He has published over 70 articles in local and international academic journals, and is the Principal Investigator of a research project on the legal aspects of the use of data science in health innovation in Africa, funded by the NIH. He also has a private legal practice, and has served as legal counsel in 18 reported cases.

For more information, visit www.thaldar.com.

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 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 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 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.

Misha Rashkin, MS, CGC, graduated from the Icahn School of Medicine Masters program in genetic counseling in 2013. He is a clinical genetic counselor in oncology at Stanford HealthCare and his research interests center on population scale use of genetic information, as well as interventions to improve the quality, accessibility, and efficiency of oncologic genetic counseling. Misha has held clinical, research, and policy roles in both academic medicine and the private sector. Misha was a member of the Mount Sinai Institutional Review Board in 2013. He was awarded the New Leader award from the National Society of Genetic Counselors (NSGC) in 2016, and chaired the Public Policy Committee for the NSGC in 2018. Misha lectures on privacy and genetic discrimination for genetic counseling graduate students, and has been published in the Journal of Genetic Counseling and Genetics in Medicine.

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, 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).

Taner Kuru is a PhD researcher at Tilburg Institute for Law, Technology and Society (TILT). While his general research interest focuses on ethical and legal implications arising from artificial intelligence-driven genetic research, he specifically focuses on regulating investigative genetic genealogy in this intersection. Taner completed the Advanced LL.M. in Law and Digital Technologies program at Leiden University with cum laude distinction as an awardee of the Jean Monnet Scholarship in 2020. He then received the European Data Protection Law Review’s “Young Scholar Award” for his article titled “Genetic Data: The Achilles’ Heel of the GDPR?” based on his master’s thesis. He also worked as an intern at the United Nations Interregional Crime and Justice Institute (UNICRI) Centre for Artificial Intelligence and Robotics during 2020. He is also a certified lawyer at Ankara Bar Association and previously worked as an attorney-at-law in Turkey.

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.

Dr. Audrey Lebret investigates the interactions between new technologies, biomedicine and human rights, at the Center for Advanced Studies in Biomedical Innovation Law (CeBIL), Copenhagen University. She is currently working on AI@Care, a collaborative project with data scientists to identify sources of bias and discrimination in healthcare algorithms, with the aim to develop guidelines to prevent them. In particular, she investigates the notion of discrimination in international and comparative law as legal constraints playing on the design and use of algorithms. Among other topics in international and comparative law, her prior research concerned the interactions between human rights in organ transplantation norms. She also worked on end-of-life decision-making, right to try experimental treatments in Europe and the US, reproductive technologies, privacy and the internet, same-sex marriage etc. Audrey’s education is both in law and in management. She obtained her doctorat en droit at Panthéon-Assas University (Paris Human Rights Center). Among other topics, she teaches Health and Human Rights and European Court of Human Rights.

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.

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, 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 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.

Michael Pepper is Director of the Institute for Cellular and Molecular Medicine, Director of the SAMRC Extramural Unit for Stem Cell Research and Therapy and a research professor in the Department of Immunology in the Faculty of Health Sciences at the University of Pretoria. He is also professeur associé in the Department of Genetic Medicine and Development in the Faculty of Medicine at the University of Geneva, Switzerland. He obtained his MBChB in 1982 from the University of Cape Town, and moved to Geneva in 1986, where he obtained his PhD in 1990, MD in 1992 and Privat Docent in 1997. He returned to South Africa in July 2004.

Michael has worked extensively in the field of clinically-oriented (translational) molecular cell biology, and his interests include stem cells and the human genome as well as their ethical, legal and social implications (ELSI). He assists the National Department of Health with legislation concerning human tissues and in particular cell-based therapies, and is President and Chairman of the Board of the South African Tissue Bank Association. Michael is chairperson of a consensus study on the ELSI of human genome editing which is being conducted for the Academy of Science of South Africa.

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 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 (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 H. Zawati (LL.B., LL.M., Ph.D. (DCL)) is an Assistant Professor at McGill University's Faculty of Medicine and the Executive Director of the Centre of Genomics and Policy in the Department of Human Genetics. He is also an Associate Member of McGill’s Biomedical Ethics Unit. His research concentrates on the legal, ethical and policy dimensions of health research and clinical care, with a special focus on biobanking, data sharing, professional liability, and the use of novel technologies (e.g. mhealth apps, WGS, WES) in both the clinical and research settings. Dr. Zawati is funded by Genome Canada, Genome Quebec and the Terry Fox Research Institute. His work is interdisciplinary, drawing together perspectives from law, ethics, bioinformatics, genomics, and policy. He’s also a frequent presenter on a variety of the most critical and topical issues in healthcare and the biosciences. He has appeared at 100+ international conferences, symposia, meetings, and has shared his expertise with universities, research ethics boards and law firms. Dr. Zawati has published 13 book chapters and 45+ peer reviewed articles in leading publications such as Nature Reviews Genetics, the Canadian Medical Association Journal, the Journal of Law and the Biosciences, the Journal of Medical Genetics, and the McGill Journal of Law and Health. In 2015, he was awarded the Queen Elizabeth II Diamond Jubilee Scholarship (stay at Oxford University) and was named a Royal Society of Canada Delegate for the IAP Young Scientists of the Year international symposium. In 2014, the Young Bar Association of Montreal named him as one of its Lawyers of the Year.

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.