The purposes of the HUGO Ethics Committee include:
- to promote discussion and understanding of social, legal and ethical issues as they relate to the conduct of, and the use of knowledge derived from, human genome research. This may encompass consideration of research directions, practices and results, and the issues of human diversity, privacy, and confidentiality, intellectual property rights, patents, and commercialisation, disclosure of genetic information to third parties, the non-medical use of such information, and the medical, legal and social aspects of testing, screening, accessibility , DNA banking, and genetic research;
- to act as an interface between the scientific community, policy makers, educators, and the public;
- to foster greater public understanding of human variation and complexity;
- to collaborate with other international bodies in genetics, health, and society with the goal of disseminating information;
- to deliberate about policy issues in order to provide advice to the HUGO Council and to issue statements where appropriate;
- to report on its activities at least annually to the HUGO Council: and to act on any other related matter.
Professor Ruth Chadwick (UK)
Ruth Chadwick is Director of the ESRC (Economic and Social Sciences Research Council) Centre for Economic and Social Aspects of Genomics (Cesagen), Cardiff University, UK. She also holds a Link Chair between Cardiff Law School and the School of English, Communication and Philosophy (ENCAP). She has co-ordinated a number of projects funded by the European Commission, including the EUROSCREEN projects (1994-6; 1996-9) and co-edits the journal Bioethics and the online journal Genomics, Society and Policy. She is Chair of the Human Genome Organisation Ethics Committee and has served as a member of several policy-making and advisory bodies, including the Panel of Eminent Ethical Experts of the Food and Agriculture Organisation of the United Nations (FAO), and the UK Advisory Committee on Novel Foods and Processes (ACNFP). She was editor-in-chief of the award winning Encyclopedia of Applied Ethics (1998), of which a second edition is now being prepared. She is an Academician of the Academy of Social Sciences and a Fellow of the Hastings Center, New York; of the Royal Society of Arts; and of the Royal Society of Medicine. In 2005 she was the winner of the World Technology Network Award for Ethics for her work on the relationship between scientific developments and ethical frameworks.
Carlos Romeo Casabona (Spain)
Carlos María Romeo-Casabona is Professor of Criminal Law at The University of the Basque Country and Director of the Inter-University Chair BBVA Foundation - Provincial Government of Biscay in Law and the Human Genome, at the Universities of Deusto and of The Basque Country, Bilbao.
Founder and Director of the Centre for Criminology Studies (1990-1996) and Dean of the Law School (1991-1994) of the University of La Laguna.
Personal Education: LL and Doctorate in Law, Doctorate in Medicine, Higher Diploma in Criminology.
Some teaching activities: Professor in numerous European, Latin-American and International Post-graduate and Quality Programs. He has been a member (2. Gutachten) of three evaluating commissions of doctoral thesis (Promotion) in Germany. Invited at several European, Latin-American and Asian Universities.
Research activities and publications: Coordinator or participant in numerous Spanish, European and Asian funded research projects.
Author (14), co-author (220) and editor (30) of books, book's chapters and articles, published in seven languages (around 70 in non-Spanish languages). Founder (1993) and editor of the Reviews "Law and the Human Genome" and "Perspectivas" (both bilingual), and of the series "Studies in Criminal Law and Criminology" (105 volumes), "Collection on Law and Life Sciences" (30 vol.) (Comares Publishing) and monography serie on Human Genetics and the Law (20 vol.).
Author or collabotrator for the drafting of some Spanish Acts and Royal Decrees.
Activities as an expert, consultant and assessor: Member of the European Research Area Board (ERAB), Steering Bioethics Committee of the Council of Europe, of the Committee of Bioethics of Spain, of the Spanish National Commission on the Control and Monitoring on the Donation and Use of Human Cells and Tissues, Chairman of the Ethics Committee on Clinical Trials of the Autonomous Community of the Basque Country. He has been an adviser of the Spanish Minister of Health and Consumption and of the Ministry of Justice.
Awards and honours: Five Honorary Degrees "Doctor Honoris Causa" from several Latin-American and Spanish Universities. Corresponding member of the Royal Academy of Medicine of Zaragoza and Honorary Professor of the University Nacional Mayor de San Marcos, Lima (Peru).
Abadallah Daar (Canada)
Professor Abdallah S Daar is Professor of Public Health Sciences and of Surgery at the University of Toronto. He is also Senior Scientist and Director of the Program on Ethics and Commercialization, McLaughlin-Rotman Centre for Global Health, University Health Network and University of Toronto.
His major research focus is on the use of life sciences to ameliorate global health inequities, with a particular focus on building scientific capacity and increasing innovation in developing countries, in addition to studying how technologies can be rapidly taken from “lab to village”.
His work has spanned biomedical sciences, surgery, organ transplantation, bioethics and global health. His major international awards include the Hunterian Professorship of the Royal College of Surgeons of England and the UNESCO Avicenna Prize for Ethics of Science. He is a fellow of the Royal Society of Canada, the New York Academy of Sciences, the Canadian Academy of Health Sciences and of the Academy of Sciences of the Developing World (TWAS). He has published 5 books, and over 300 research articles and chapters in books. He has trained hundreds of graduate students.
Daar is a member of UNESCO’s International Bioethics Committee and the Ethics Committee of the Human Genome Organization. He was a member of the Africa Union High Level Panel on Modern Biotechnology, which published its seminal report, “Freedom to Innovate”, in 2007.
His recent accomplishments include work on the Grand Challenges in Global Health, and he led a global study of Grand Challenges in Chronic Non-Communicable Diseases. He has advised the UN Secretary General's Office, UNESCO, WHO, and the Government of Canada. He studied medicine at Makerere University, Uganda and University of London, before going to Oxford for clinical residency and fellowship training and a doctorate in immunology. He was on the faculty of Oxford University before moving to the Middle East to help start two new medical schools. He moved to the University of Toronto in 2001. Professor Daar is Chair of the Board of Advisors of the United Nations University International Institute of Global Health, and of the Board of the recently created Global Alliance for Chronic Diseases.
Donald Chalmers (Australia)
Donald Chalmers is Dean of Law and Director of the Centre for Law and Genetics at the University of Tasmania. He is a Foundation Fellow of the Australian Academy of Law.
He is Chair of the Gene Technology Ethics and Community Consultative Committee, Deputy Chair of the National Health and Medical Research Council (NHMRC) Embryo Research Licensing Committee, member of the NHMRC Human Genetics Advisory Committee and a Director of the National Breast and Ovarian Cancer Council.
He was Chair of the NHMRC Australian Health Ethics Committee, 1994-2000; Chair Scientific Ethical and Regulatory considerations relevant to the Cloning of Human Beings, 1998-1999; member of the Commonwealth Biotechnology Advisory Council, 1999-2002; Law Reform Commissioner for Tasmania, 1991-1997; consultant to the Australian Law Reform Commission Report on the genetic privacy, 2001-2003; chair of the Australian Institute of Health, Law and Ethics from 2002-2005, Chair of the Australian Red Cross Ethics Committee 2000-09; Board member of the Australian Institute of Family Studies, 1998-2006.
Internationally, he is a member of the International Cancer Genome Consortium Ethics Committee.
His current major research interests are in health law and genetics, research ethics and law reform. His research work involves an examination of the legal and governance arrangements for human tissue biobanks. He has been Chief Investigator on several ARC research grants and an NHMRC program grant.
Kazuto Kato (Japan)
Kazuto Kato is Associate Professor of science communication and bioethics at the Institute for Research in Humanities, Kyoto University, Japan. He obtained his PhD in developmental biology at Kyoto University and worked in the Wellcome/CRC Institute for Cancer and Developmental Biology, University of Cambridge as a postdoctoral fellow. When he returned to Japan in 1993, he started to work in the interface between bioscience and society. Since April 2002, he has been a member of HUGO's International Ethics Committee.
Genoveva Keyeux (Colombia)
Genoveva Keyeux is Assistant Professor in Genetics at the Instituto de Genética, Universidad Nacional de Colombia in Bogotá, since 2000.
She is a Biologist and M.Sc. from the University of Louvain, Belgium, and in 1989, after completing her Ph.D. training in Molecular Biology at the University of Montpellier II, France, she returned to Colombia to create the Molecular Genetics Unit at the Instituto de Genética Humana, Universidad Javeriana, and was its Director until 1999. She has also been visiting professor in genetics and inmunogenetics at the Science Faculty, University of Montpellier II, France.
She conducted basic and applied research in classical and molecular genetics in humans, with an emphasis in anthropological genetics. Dr. Keyeux’s research focused on population studies in Northern Africans and French, as well as in native groups from Colombia (Amerindians and Afro-descendants). She also investigated some diseases with a population component like immune disorders, Cystic Fibrosis, Duchenne Muscular Dystrophy and mitochondrial disorders. She has been member of the Cystic Fibrosis Genetic Analysis Consortium (CFGAC), the Red Latinoamericana de Fibrosis Quística (RELAFQ), the European Community Concerted Action for Cystic Fibrosis (ECCACF), and of the Asociación Latinoamericana de Antropología Biológica (ALAB).
In the last 15 years, she linked scientific research to bioethics. She presently conducts research on bioethical issues of genomics and genetics in Colombia, with a particular focus on gender perspective. She has authored and co-authored several reports, book chapters, peer reviewed papers and conferences in the field of genetics, population studies, genomics and bioethics.
She was member of the International Bioethics Committee (IBC) of UNESCO (1993-1998), and is founder and member of the executive board of the Red Latinoamericana de Bioética UNESCO - REDBIOETICA (2002-present). She has also been a member of the Bioethics Committee of the International Union of Biological Sciences IUBS.
She was awarded the Special program incentives to researchers in genetics by COLCIENCIAS and the honours by the Colombian Genetics Society for A lifelong commitment to genetics, and by the Direction of the Legal Police (DIJIN) as Adviser of the forensics DNA laboratory and for training several members of the staff.
Daryl Macer (Thailand)
Darryl R.J. Macer is Regional Advisor on Social and Human Sciences in Asia and the Pacific, in RUSHSAP, UNESCO Bangkok, Thailand, where he has worked since November 2004. He is an Affiliated Professor in Bioethics at United Nations University Institute of Advanced Studies, since 2002, and Affiliated Professor in Philosophy at the University of Kumamoto, Japan, since 2007. He is also Director, Eubios Ethics Institute, Japan, New Zealand and Thailand since 1990. He taught bioethics at the University of Tsukuba, Japan from 1990-2005. He is member of the International Union of Biological Sciences (IUBS) Bioethics Committee, HUGO Ethics Committee, and Secretary of Asian Bioethics Association. He served as a member of UNESCO International Bioethics Committee from 1993-1998, and was a Board Member of International Association of Bioethics from 1999-2005. He is Editor, Eubios Journal of Asian and International Bioethics since 1990,and has published 10 authored books, 18 edited books in English, 7 edited books in Japanese, 190+ academic papers. Born in 1962 in Christchurch, NewZealand. B.Sc (Hons) in Biochemistry from Lincoln College, University of Canterbury, 1983; Ph.D. in Biochemistry at the MRC Laboratory of Molecular Biology, and Trinity College, University of Cambridge, U.K., 1987.
John J. Mulvihill, MD (U.S.A)
Dr. Mulvihill is a pediatrician and medical geneticist with 20 years' experience at the National Cancer Institute, where he was chief of the Clinical Genetics Section of the Clinical Epidemiology Branch and Director of the Interinstitute Medical Genetics Program of the National Institutes of Health. In 1990, he became founder, chair, and professor of Human Genetics at the University of Pittsburgh and Co-director of the Pittsburgh Genetics Institute. In 1998, he became the Kimberly V. Talley/ Children's Medical Research Institute Chair of Genetics, Professor of Pediatrics, University of Oklahoma, and Director of Program in Human Genetics.
A graduate of the College of the Holy Cross, Dartmouth Medical School, and the University of Washington, he was on the housestaffs of the University of Washington Hospital and of the Johns Hopkins Hospital. He is a member of 13 professional societies, and co-founder and past president of the International Genetic Epidemiology Society. In addition to belonging to the editorial boards of eight scientific journals, he was co-editor-in-chief of Genetic Epidemiology and editor of the Neurofibromatosis Research Newsletter.
Dr. Mulvihill's research has focused on the genetics of human cancer, with an emphasis on late effects, reproductive and genetic, in cancer survivors. He has held National Institutes of Health research grants for neurofibromatosis and pancreatic cancer and is Associate Director of the NIH General Clinical Research Center at the University of Oklahoma. He has written 287 scientific articles and edited 13 monographs.
Thomas Murray (USA)
Thomas H. Murray is President and CEO of The Hastings Center. Dr. Murray was formerly the Director of the Center for Biomedical Ethics in the School of Medicine at Case Western Reserve University, where he was also the Susan E. Watson Professor of Bioethics. He serves on many editorial boards, has been president of the Society for Health and Human Values and of the American Society for Bioethics and Humanities, and among other current posts serves as Chair of the Ethical Issues Review Panel for the World Anti-Doping Agency and as International Expert Advisor to Singapore’s Bioethics Advisory Committee. Dr. Murray has testified before many Congressional committees and is the author of more than 200 publications including The Worth of a Child, The Cultures of Caregiving: Conflict and Common Ground among Families, Health Professionals and Policy Makers, edited with Carol Levine, and Genetic Ties and the Family: The Impact of Paternity Testing on Parents and Children, edited with Mark A. Rothstein, Gregory E. Kaebnick and Mary Anderlik Majumder. He is also editor, with Maxwell J. Mehlman, of the Encyclopedia of Ethical, Legal and Policy Issues in Biotechnology. In January 2004 he received an honorary Doctor of Medicine degree from Uppsala University.
Ishwar Verma (India)
Ishwar Chander Verma is Senior Consultant and Head of Dept of Genetic Medicine, at Sir Ganga Ram Hospital, New Delhi, India. He was formerly Professor of Medical Genetics and Pediatrics at the All India Institute of Medical Sciences, New Delhi. He is a recipient of many national awards in the field of medical genetics in India, notably from Indian Council of Medical Research, Medical Council of India, National Academy of Medical Sciences, Ranbaxy Science Foundation etc. He serves as an expert to the Genetic and Genomic Advisory Committees of the World Health Organization (WHO), Task Force on Genetics of Indian Council of Medical Research and the Dept of Biotechnology of the Govt of India. His research interests include genomics of birth defects, molecular diagnostics, genetic counseling and prenatal diagnosis. He is a Vice-Chair of HUGO's International Ethics Committee.
Xiaomei Zhai (China)
ZHAI Xiaomei, Ph.D, Professor & Executive Director, Centre for Bioethics, Chinese Academy of Medical Sciences/Peking Union Medical College; Professor & Director, Department of Social Sciences and the Humanities, Peking Union Medical College. Main research fields: clinical ethics, research ethics and public health policy ethics.
She was Edmund Pellegrino Fellow at Georgetown University(June 2009), fellow at Harvard School of Public Health in U.S（2001-2003, visiting Scholar at Lancaster University in UK, Ruhr University Bochum in Germany, Johns Hopkins University, USA, Erasmus Mundus Bioethics Programme in Europe. She is the member of National Ethics committee of Ministry of Health in China, the vice president of Ethics Committee, Chinese Society for Genetics, the president of Chinese Society of Bioethics in the society of Chinese Philosophy, Science & Technology, the Member of Steering committee on the Curricula of the Humanities and Social Sciences of Ministry of Education in China. She is an associate Editor-in-Chief of Chinese Medical Ethics.
Statements released by the HUGO Ethics Committee: