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.
Committee Members
 Professor Ruth Chadwick (UK)
Committee Chair
Ruth Chadwick is Professor of Bioethics and Director of the ESRC Centre for Economic and Social Aspects of Genomics at Lancaster University. She held positions in Liverpool, Cardiff and Preston before moving to Lancaster in 2000. 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. She is a member of the Food Ethics Council, the Advisory Committee on Novel Foods and Processes, the Standing Committee on Ethics of the Canadian Institutes for Health Research, and the Medical Research Council DNA Banking Steering Committee. She was editor-in-chief of the award winning Encyclopedia of Applied Ethics (1998). She is an Academician of the Academy of the Learned Societies for the Social Sciences. Current research grants include (with Oxford and Sheffield) the Wellcome Trust Electronic Bioethics Resource and she is a partner in the North West Genetics Knowledge Park (NoWGeN).
 Kare Berg (Norway)
Dr. Kare Berg is Professor of Medicine, University of Oslo and was until recently Head of its Institute of Medical Genetics, and Physician-in-Chief, Department of Medical Genetics, as well as Director, Center for Preventive Medicine, Ulleval University Hospital. Professor Berg is Advisor to the Human Genetics Programme of the World Health Organization (WHO) and co-author of its Proposed International Guidelines on Ethical Issues in MedicalGenetics and Genetic Sevices (WHO, 1998) and Review of Ethical Issues in Medical Genetics (WHO, 2003). His main research interests are the genetics of common disorders, gene-environment interaction, and the Lp(a) lipoprotein (which he discovered). Professor Berg is the author of more than 600 scientific or bioethical papers and the editor of several books, and he edited the monthly journal Clinical Geneticsfor 26 years. Professor Berg has been Norwegian delegate to the bioethics committees of the Council of Europe and Chairman, Permanent Committee of the International Congresses of Human Genetics.
 Abadallah Daar (Canada)
Dr. Daar is Professor of Public Health Sciences and of Surgery at the University of Toronto, where he is also Director of the Program in Applied Ethics and Biotechnology at the University of Toronto Joint Centre for Bioethics. He is also the Director for Policy and Ethics at the McLaughlin Centre for Molecular Medicine, University of TorontoAfter medical school in London, England, he went to the University of Oxford where he did postgraduate clinical training in surgery and also in internal medicine, a doctorate in transplant immunology/immunogenetics, and a fellowship in transplantation. He was a clinical lecturer in Oxford for several years before going to the Middle East to help start two medical schools. He took up the foundation Chair of Surgery in Oman in 1988, where he also headed the research labs.
He has published two books (on tumour markers and on surgical radiology) and has over 250 publications in immunology, immunogenetics, transplantation, surgery, and bioethics. He chaired the WHO Consultation on Xenotransplantation and wrote the WHO Draft Guiding Principles on Medical Genetics and Biotechnology. He has been an expert advisor to WHO and OECD. He is a Fellow of the New York Academy of Sciences and is on the Ethics Committee of the (International) Transplantation Society and of the Human Genome Organization. He holds the official world record for performing the youngest cadaveric donor kidney transplant. Professor Daar is also a member of the Institute Advisory Board, Institute of Infection and Immunity of the Canadian Institutes of Health Research.
In 1999 he was awarded the Hunterian Professorship of the Royal College of Surgeons of England. In 2000 he was appointed to the Roster of Experts for the Food and Agriculture Organization of the United Nations / WHO Joint Consultations on Foods Derived from Biotechnology. He has been a Visiting Scholar in Bioethics at Stanford University and Visiting Professor in the Faculty of Law at the University of Toronto. Editorial Boards include World Journal of Surgery, Kidney Forum, Clinical Transplantation Proceedings and Bioethics. His current research interests are in the exploration of how genomics and other biotechnologies can be used effectively to ameliorate global health inequities.
 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.
 Daryl Macer (Thailand)
Darryl R.J. Macer is Regional Advisor on Social and Human Sciences in Asiaand the Pacific, in RUSHSAP, UNESCO Bangkok, Thailand, and AffiliatedProfessor in Bioethics at United Nations University Institute of AdvancedStudies since 2002. He is also Director, Eubios Ethics Institute, Japan, NewZealand and Thailand since 1990. He taught bioethics at the University of Tsukuba, Japan since1990. He is member of the International Union of Biological Sciences (IUBS) Bioethics Committee, HUGO Ethics Committee, Board Member of InternationalAssociation of Bioethics, and Secretary of Asian Bioethics Association. He is Editor, Eubios Journal of Asian and International Bioethics since 1990,and has published 8 authored books, 11 edited books in English, 7 editedbooks in Japanese, 160+ academic papers. Born in 1962 in Christchurch, NewZealand. B.Sc (Hons) in Biochemistry from Lincoln College, University ofCanterbury, 1983; Ph.D. in Biochemistry at the MRC Laboratory of MolecularBiology, and Trinity College, University of Cambridge, U.K., 1987.
 Thomas Murray (USA)
Thomas H. Murray is President 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 is a founding editor of the journal Medical Humanities Review, and is on the editorial boards of The Hastings Center Report; Human Gene Therapy; Politics and the Life Sciences; Cloning, Science, and Policy; Medscape General Medicine; Teaching Ethics; and the Journal of Law, Medicine & Ethics. He served as President of the Society for Health and Human Values, and of the American Society for Bioethics and Humanities and is currently Chair of the Ethical Issues Review Panel of the World Anti-Doping Agency. Dr. Murray has testified before many Congressional committees, and is the author of more than 200 publications. His most recent books are The Worth of a Child, published by the University of California Press, Healthcare Ethics and Human Values: An Introductory Text with Readings and Case Studies, Blackwell Publishers, which he edited with Bill Fulford and Donna Dickenson and The Cultures of Caregiving: Conflict and Common Ground among Families, Health Professionals and Policy Makers, which he edited with Carol Levine. He is also editor, with Maxwell J. Mehlman, of the Encyclopedia of Ethical, Legal and Policy Issues in Biotechnology, (John Wiley & Sons, 2000). 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.
 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.
Statements released by the HUGO Ethics Committee:
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