WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing
Biographies by alphabetical order
Dr. Alquwaizani, is a Doctor of pharmacy graduated from Massachusetts College of Pharmacy and Health Sciences. He is an infectious disease clinical pharmacist graduated from Brigham and Women’s Hospital; Boston, USA.
Dr. Alquwaizani is currently the director of Drug Benefit and Risk Evaluation at the Saudi Food and Drug Authority. Prior to his current position, he was the Director of the National Pharmacovigilance and Drug Safety Center at the Saudi FDA.
Dr. Alquwaizani has participated in multiple national and international safety and efficacy committees and task forces.
Professor of Genetics at the University of Warsaw. Current research interests: role of mitochondria in human diseases and aging; previous DNA methylation, regulation of gene expression in mitochondria, mitochondrial DNA mutations in cancer. She coordinated the program of reforming the science curriculum in Polish schools in 2008 and is active in popularizing science.
Member of the Bioethics Committee of the Praesidium of the Polish Academy of Sciences since 2015.
Member of the UNESCO International Bioethics Committee 2010-2017, rapporteur 2015-2017.
Member of the PISA Science Expert Group 2006-2009.
Françoise Baylis, CM, ONS, PhD is a philosopher whose innovative work in bioethics, at the intersection of policy and practice, challenges us to think broadly and deeply about the direction of health, science and biotechnology. Through her academic and advocacy work she aims to move the limits of mainstream bioethics and develop more effective ways to understand and tackle public policy challenges.
A public voice for the common good, Baylis brings her ethical sensibilities, informed by best practices, theory and common sense, to a wide range of public issues. She is a frequent guest on CBC and Radio Canada and the author of many news stories with a “behind the scenes” look at ethical issues. Her current research focuses on heritable human genome modification, the body economy, assisted human reproduction, and research involving women. With a personal mantra to “make the powerful care,” Baylis contributes to policy-making via government research contracts, committee membership and public education. This work –informed by an unwavering commitment to the common good – focuses largely on issues of social justice.
Françoise Baylis is University Research Professor at Dalhousie University. She is a member of the Order of Canada and the Order of Nova Scotia, as well as a Fellow of the Royal Society of Canada and a Fellow of the Canadian Academy of Health Sciences. In 2017 she was awarded the Canadian Bioethics Society Lifetime Achievement Award.
Buyx, Alena M.
Alena Buyx is Professor of Ethics in Medicine and Health Technologies and Director of the Institute for History and Ethics of Medicine at Technical University Munich, Germany. She has been a member of the German Ethics Council since 2016 and currently leads its Working Group on Human Germline Editing. Previously, she held appointments at the University of Kiel, University of Münster, Harvard University, and University College London, and she was Assistant Director of the Nuffield Council on Bioethics, London.
Alena Buyx is a medical doctor with postgraduate degrees in philosophy and sociology. Her research spans the whole field of biomedical ethics, with a particular focus on ethics of medical innovation and health technologies, research ethics, questions of solidarity and justice in contexts such as public health and health care provision, and novel participatory approaches in biomedicine and beyond. Her work is published in high-ranking journals, such as Science, BMJ, GiM or Bioethics.
She is keen on pursuing an interdisciplinary, embedded-ethics approach and collaborates regularly with clinical colleagues as well as with public health professionals, political and social scientists, philosophers, lawyers or health economists. In addition to research and teaching, Professor Buyx is active in the political and regulatory aspects of biomedical ethics, sitting on a number of high-level national and international ethics bodies concerned with policy development and implementation, and consulting for various international research consortia and policy initiatives. She is committed to communicating with the public and lectures widely; she regularly appears on TV and in various other media.
Charo, R. Alta
R. Alta Charo (AB biology, Harvard 1979; JD law, Columbia 1982) is the Warren P. Knowles Professor of Law and Bioethics at the University of Wisconsin. Prior to her arrival at UW in 1989, she worked as a legislative drafter, as a legal analyst for the congressional Office of Technology Assessment and as a policy analyst for the U.S. Agency for International Development. She was a member of President Clinton's National Bioethics Advisory Commission, which wrote reports on topics such as research with biological materials and transnational research ethics. She also served as a senior policy analyst at the FDA under the Obama administration, focusing on drug safety and on governance of emerging technologies, such as genetically engineered foods and nanotechnology. Charo is an elected member of the National Academy of Medicine (formerly known as the IOM), where she co-chaired the committee that drafted guidelines for embryonic stem cell research and the committee that issued the 2017 report on science, ethics and governance of human genome editing. She was also founding co-chair of the Academies' Regenerative Medicine Forum. Most recently, she was a member of the organizing committee for the Second International Summit on Human Genome Editing, held in Hong Kong in November 2018. She writes on topics including reproductive rights, research ethics, and biotechnology policy.
Hervé Chneiweiss is a neurologist and neuroscientist, MD-PhD, Research Director at the CNRS. He is currently head of the research centre Neuroscience Paris Seine – IBPS (CNRS /Inserm/Sorbonne University) and PI of the Glial Plasticity team. First trained as a neurologist (gait and movement disorders, Parkinson), he was involved in the neurogenetics of human diseases such as cerebellar ataxias. His scientific work was then dedicated to the biology of astrocytes and their roles in brain tumour origin and progression. His team contributed in recent progress in identifying cell-intrinsic mechanisms orchestrating brain tumour cells plasticity, some leading to on-going clinical trials. He has authored more than 150 academic papers.
He is also involved in bioethics, presently head of the Inserm Ethics Committee (IEC), member of the International Committee of Bioethics of UNESCO (2014-2021) and former member of the French National Consultative Ethics Committee (CCNE, 2013-2017). He wrote several books or chapters on bioethics of human embryos, human genetics and neurosciences. On the basis of an opinion of the IEC in 2015 on genome editing he was an active promoter of a european initiative “Fostering Responsible Research with Genome Editing Technologies: A European Perspective”, Hirsch et al. Nature 2017 and Chneiweiss et al. Transgenic Research 2017 (https://link.springer.com/article/10.1007/s11248-017-0028-z) that resulted in the international association ARRIGE (Association for Responsible Research and Innovation in Genome Editing. Vice-President: https://arrige.org/).
De Vries, Jantina
Jantina de Vries is an Associate Professor in Bioethics at the Department of Medicine of the University of Cape Town. Her work focuses on developing ethical best practice for genomics research and biobanking in Africa. Amongst others, she has contributed to developing an evidence base for best practice in informed consent for African genomics research, investigating ethical challenges relating to the sharing of African samples and data, exploring what constitutes fairness in African genomics research collaborations, and studying how genomic research may impact on stigma relating to disease. A second and equally important output relates to the translation of her work into forward-looking policies and best practice guidelines that are used in the regulation of genomics research in Africa.
Jantina obtained her DPhil through The Ethox Centre at the University of Oxford (2011), and an MSc degree in sociology at Wageningen University (2003). She was at the European University Institute between 2003-2004. Jantina co-directs the IFGENERA H3Africa ELSI Collaborative Centre and is the PI on an H3Africa grant exploring the relation between stigma and genetic attribution. She is a member of the Human Cell Atlas Ethics Working Group, of the P3G Board of Directors, the WWARN Data Access Committee, as well as a member of Advisory Boards for several ongoing genomics research projects.
Dr Cynthia Holland completed an Honours degree in Law at The University of Melbourne, Australia in 1998, prior to qualifying as a Barrister-at-Law in 2005.
Cynthia has worked extensively for the past 30 years in Reproductive Medicine, Obstetrics and Gynaecological Oncology in major metropolitan hospitals across Australia, particularly as a member of specialist multi-disciplinary surgical teams in Gynaecological Oncology. Dr Holland concurrently completed long term clinical research culminating in the award of a PhD in Obstetrics and Gynaecology in 2006. She also held the position of Legal Counsel to the National Association of Oncology Social Work Australia (OSWA) from 2007 to 2016.
As a Barrister, Cynthia has appeared in most Victorian Court jurisdictions in Australia in criminal, forensic, and health care cases. She was awarded a Memorial Churchill Fellowship in 2009, leading to a residency at Harvard University, Massachusetts (2011-12) during which time she completed an Advanced Leadership Fellowship, inclusive of American legal studies at Harvard Law School.
Dr Holland completed post-doctoral research in Gynaecological Oncology in 2015 at The University of Melbourne, Australia, and continues to hold a senior clinical leadership role at a major metropolitan hospital. Her specialist clinical practice combines Oncology counselling with end of life patients and their children, statutory Infertility counselling, and affiliated professional memberships, including the Australian and New Zealand Infertility Counsellors Association (ANZICA), and Fertility Society of Australia (FSA). Cynthia’s commitment to medico-legal, criminal and family law cases at the Victorian Bar continues, together with affiliated legal research.
Dr. Maneesha Inamdar is a stem cell and developmental biologist conducting research in Bangalore, India. Her group uses gene editing tools to manipulate stem cells and generate disease models for scientific insight into human development and devising therapeutic strategies. This has application in prevention of congenital defects and for regenerative therapies.
Dr. Inamdar pioneered human embryonic stem cell derivation and use in India. This provided stem cells that represent the Indian genetic diversity, are eligible for use globally and have been distributed worldwide. She has several international projects and has contributed significantly to national and international training programs and guidance documents. She heads or serves on several high level scientific review, funding and ethics committees. She is member of the steering group of the International Stem Cell Banking Initiative (ISCBI), member of the Scientific Advisory Board, human pluripotent stem cell Registry, Europe and part of the International Stem Cell Initiative (ISCI) projects. While furthering discovery she is deeply involved in science outreach, education and public engagement at multiple levels and in varied formats.
Dr. Inamdar received her academic training in India and the USA. She is currently Professor and Dean at the Jawaharlal Nehru Centre for Advanced Scientific Research, Bengaluru, Adjunct Professor, Institute for Stem Cell Biology and Regenerative Medicine, Bengaluru and Visiting Professor, Tata Institute for Genetics and Society, Bengaluru. She has received many awards and fellowships, including the National Bioscience Award (2011), Department of Biotechnology, India, and the Dr. Kalpana Chawla Award (2017).
Kazuto Kato, Ph.D., is professor of biomedical ethics and public policy at the Graduate School of Medicine, Osaka University. Dr. Kato has a Ph.D. degree in developmental biology from Kyoto University. After finishing postdoctoral research at the University of Cambridge with Sir John Gurdon, he started to work on ethical and social issues related to life sciences. Dr. Kato is currently specializing in biomedical ethics, research governance and patient engagement in medical research.
Dr. Kato has served as a member of various international projects and academic societies to include the Ethics Committee of the Human Genome Organization (currently, Committee on Ethics, Law, and Society); the Ethics and Governance Committee of the International Cancer Genome Consortium; the Ethics Committee of the International Society for Stem Cell Research; and the Steering Committee of the Global Alliance for Genomics and Health. In 2010, he was appointed a member of the Expert Panel on Bioethics of the Council for Science, Technology, and Innovation in Japan’s Cabinet Office. The panel has been working on the ethical and social issues of human genome editing technology since 2015. He also served as a member of the Organizing Committee of the Second International Summit on Human Genome Editing, held in November 2018 in Hong Kong.
Robin Lovell-Badge is a senior group leader and head of the Laboratory of Stem Cell Biology and Developmental Genetics at the Francis Crick Institute.
In 1990, his lab discovered Sry, the Y-linked sex determining gene, as well as the first members of the Sox gene family. Major themes of his current work include sex determination, development of the nervous system and pituitary, and the biology of stem cells within the early embryo, the CNS and the pituitary. He is also very active in both public engagement and policy work. With respect to human genome editing: He is a member of the Hinxton Group steering committee, which organised the first international meeting on the topic in 2015. He was on the organising committee for both International Summits on Human Gene Editing, and he was a member of the National Academies of Sciences “Study Committee”.
He is a member of EMBO (1993), a Fellow of the Academy of Medical Sciences (1999), a fellow of the Royal Society (2001). He has received the Louis Jeantet Prize for Medicine (1995), the Amory Prize (Awarded by the American Academy of Arts and Sciences) (1996), the Feldberg Foundation Prize (2008), and the Waddington Medal of the British Society for Developmental Biology (2010). He is also an honorary professor at University College, London and a Special Visiting Professor at the University of Hong Kong. He was awarded a CBE in the 2018 New Year’s Honours List.
Jamie Metzl is a leading technology futurist and geopolitical expert and Senior Fellow of the Atlantic Council. He previously served in the U.S. National Security Council, State Department, Senate Foreign Relations Committee, as Executive Vice President of the Asia Society, and as a Human Rights Officer for the United Nations in Cambodia. Jamie is a faculty member for Singularity University’s Exponential Medicine track and was Chief Strategy Officer for a Boston-based biotechnology company.
Jamie appears regularly on national and international media and his syndicated columns and writing on Asian affairs, genetics, virtual reality, and other topics are featured regularly in publications around the world. He is the author of a history of the Cambodian genocide, the historical novel The Depths of the Sea, and the genetics thrillers Genesis Code and Eternal Sonata. His non-fiction book Hacking Darwin: Genetic Engineering and the Future of Humanity will be published by Sourcebooks in April 2019.
A founder and Co-Chair of the national security organization Partnership for a Secure America, Jamie is a board member of the International Center for Transitional Justice and the American University in Mongolia, and a member of the Advisory Board of the Brandeis International Center for Ethics, Justice, and Public Life. He is a member of the Council on Foreign Relations is a former White House Fellow and Aspen Institute Crown Fellow. Jamie holds a Ph.D. in Asian history from Oxford, a JD from Harvard Law School, and is a graduate of Brown University
Ana Sánchez Urrutia was born in Panama in 1962. She studied Law at the University of Panama. She obtained her PhD in Law at the University of Barcelona. She was a lecturer of constitutional law at the university from 1989 to 1996 and professor from 1996 to 2013. As a member of the Observatory of Bioethics and Law of the UB she has participated in various working groups to prepare opinion documents on Bioethics in her capacity as an expert in constitutional law and fundamental rights. In Spain she has participated in various committees and commissions such as the Clinical Research Ethics Committee of the Hospital Clínic of Barcelona, and the Research Bioethics Committee of the University of Barcelona. She has participated in Government Commissions such as the Advisory Council of the Catalan Data Protection Authority or Member of the National Commission for the use of DNA for forensic purposes of the Ministry of Justice of Spain.
Currently an advisor to the National Secretariat of Science, Research and Innovation in Panama (SENACYT). She is a member of the National Committee on Research Bioethics in Panama and remains an associate member of the Observatory of Bioethics and Law. She has also participated in the draft of Panamanian legislation on research for health and use of human cells and tissues.
She has published on several topics related to bioethics and the law, from a constitutional perspective. Among them, she is coauthor of Tecnología, Intimidad, y Sociedad democrática (2003), and author of several papers on privacy and technology.
Prof. Jacques SIMPORE holds two PhD’s degrees, one in Molecular Genetics and another one in Bioethics/Ethics. Currently, Prof. Jacques SIMPORE is a Full Professor in Molecular Biology and Genetics at the University Ouaga I Professor Joseph Ki-Zerbo and the Rector of Saint Thomas d'Aquin University (USTA). He is also the Managing Director of Pietro Annigoni Bio-molecular Research Center (CERBA), a key national laboratory in Human Papillomavirus Research (LNR-HPV) and Head of the Laboratory for Molecular Biology and Genetics (LABIOGENE), a center of excellence established by the West African Economic and Monetary Union (WAEMU).
Furthermore, Prof. Jacques SIMPORE has membership in many organizations, including the African Academy of Sciences (AAS), the National Academy of Sciences of Burkina Faso (ANSAL-BF), the Pontifical Academy for Life, the National Biosafety Committee of Burkina Faso, the African Society of Genetics (SAGE), the committee of experts of Burkina Faso’s Ministry of Health, the Technical Advisory Group on Immunization (GTCV) of Burkina Faso’s Ministry of Health, the Ministerial Committee for AIDS control in Burkina Faso, the National Council of Education of Burkina Faso, and the Ethics and Deontology Committee of the African and Malagasy Council for Higher Education (CAMES).
Recognized as expert in Bioethics in the World Observatory of Ethics (GEObs) by UNESCO, Prof. Jacques SIMPORE has released more than 300 international scientific papers accessible in Google Scholar H-Index 37. In collaboration with his partners, Prof. Jacques SIMPORE contributed over 380 DNA sequences in Gene Bank and overseen more than one hundred Doctoral thesis and Master dissertations.
Prof. Anne Muigai is a molecular population geneticist with over 15 years of experience in research, academic and administrative management in the Kenyan public university sector. She is currently a Professor of Genetics at the Jomo Kenyatta University of Agriculture and Technology (JKUAT), Kenya. She holds a PhD in Biochemistry from JKUAT, an MSc and B. Ed (Science) from Kenyatta University, Kenya. Her research has focused on the characterization and conservation of the indigenous farm animal genetic resources of Africa with a special focus on small ruminants. She has also worked in western Kenya on a project to assist rural communities mitigate the devastating effects of climate change, currently being experienced in the area, using sheep and goats. She is also a collaborator with the IN-AFRICA project in Kenya whose publication in Nature ,(Lahr et al., Nature 529:2016), documents the earliest scientifically dated evidence of human-group conflict in a hunter gather population over 10,000 years ago, in West Turkana, Kenya. She has served as the Chief Judge for Young Scientists Kenya, a Commissioner in the Commission for University Education and a Director with the Kenya Plant Health Inspectorate Services, which are State Corporations in the Republic of Kenya regulating the university education and agriculture sectors respectively.
ZHAI Xiaomei, Ph.D. of Philosophy of Science/Bioethics (Chinese Academy of Social Sciences CASS, Beijing, China), M.A. of Philosophy (Southeast University, Nanjing, China), Graduated from Changzhi Medical College, Shanxi, China. She has been IRB fellow at Department of Bioethics, NIH, USA, Visiting Scholar at Center for Clinical Bioethics, Georgetown University, USA, Visiting Scholar at Radboud University Nijmegen, The Netherlands, Leuven University, Belgium, Visiting Scholar at, Johns Hopkins University, USA, Research Fellow at Harvard School of Public Health, USA, Visiting Scholar at Institute of Environment, Philosophy and Public Policy, Lancaster University, U.K, and at Center for Medical Ethics, Ruhr University Bochum, Germany. Now she is Professor & Supervisor of PhD graduate students at School of the Humanities & Social Sciences, Peking Union Medical College, Executive Director at Centre for Bioethics, Chinese Academy of Medical Sciences & Peking Union Medical College. Currently she serves as Vice-President & Chief of the Office of National Ethics Committee, National Health Commission (NHC), Member of National Expert Committee on Public Policy, NHC, Chief of the Office for Medical Ethics, Chinese Association of Hospitals, Member of National Expert Committee on Human Organ Donation and Transplantation, Standing Director & Chair of Ethics Working Group for Chinese Association of STD/AIDS, President of Chinese Society for Bioethics, Vice-Chair of ELSI Committee, Chinese Society for Genetics, and Fellow of the Hastings Center. She served as the Member of Ethics Committee, HUGO and Vice President of Asian Bioethics Association, and Temporary Expert for WHO. She published books, such as the book of Death with Dignity, An Introduction to Bioethics, Medical Ethics and Public Health Ethics, and a large number of articles on bioethics, biotech regulation and health policy.