HUGO Committee on Ethics, Law and Society (CELS)
HUGO Committee on Ethics, Law and Society
The HUGO Committee on Ethics, Law and Society has the following non-profit purposes:
- To promote discussion and understanding of ethical, legal and social issues as they relate to the conduct of, and the use of knowledge derived from, human genome research, including medical and clinical genetics, and the board derivation and use of use genetic information for clinical and non-medical purposes. This scope may encompass consideration of research directions, practices and results; and issues such as: human diversity; privacy & confidentiality; intellectual property rights & patents; commercialisation; medical, legal and social aspects of sequencing, testing, & screening; biobanking; and the public health aspects of genomic and genetics.
- To act as an interface between the scientific and medical communities, policy makers, educators, and the public;
- To collaborate, as appropriate, with other international bodies in genomics, genetics, public health, medicine, and society with the goal of disseminating information, standards and opinions.
*Bartha Maria Knoppers, Adrian Thorogood and Ruth Chadwick. 2013. The Human Genome Organisation: towards next-generation ethics. Genome Medicine 5:38; http://genomemedicine.com/content/5/4/38
HUGO Committee on Ethics, Law and Society
Benjamin J. Capps (Canada)
Benjamin is an Associate Professor at the Department of Bioethics, Faculty of Medicine, Dalhousie University. Previously he was at the Centre for Biomedical Ethics, National University of Singapore (2008-2014), and the Centre for Ethics in Medicine, University of Bristol, UK (2000-2008).
He read for a Doctorate in Medical Ethics (awarded in 2003) and completed a two-year Postdoctoral Fellowship at the University of Bristol (2004-6), both funded by the Wellcome Trust’s Biomedical Ethics Programme.
Ben was previously a member of the Neuroethics Working Group of the Bioethics Advisory Committee (Singapore) and the Pro-Tem National Oversight Committee for Human Animal Combinations in Stem Cell Research (Ministry of Health, Singapore). He was a Co-PI on the European Commission FP7 project, ‘EPOCH: The role of ethics in public policy-making: the case of enhancement’, leading the workpackage: ‘Understanding governance, policies and regulatory structures of the European Union in relation to enhancement technologies in the global context.’ He recently was awarded a grant as PI, and then upon relocating to Canada became the International Expert on ‘One Health, Zoonotic Diseases and Pandemic Planning: Creating a Bioethics Framework in Singapore’ (Communicable Diseases – Public Health Research Grant; Ministry of Health, Singapore).
He has coordinated a number of projects, including a study supported by the Singapore-based NGO Belris: Bioethics Legal group for Reproductive Issues in Singapore, on elective egg freezing; a review for the UK’s Department of Trade and Industry Foresight project: Brain Science, Addiction and Drugs (2004-5); a commissioned report on ‘Public Interest’ and ‘Public Good’ as Applied to UK Biobank Access Decision-Making for the UK Biobank’s Ethics and Governance Council (2007-8); and an international multi-centre project on New Developments in Neuroscience and Genetics (2007-8). This latter project was funded by the European Monitoring Centre for Drugs and Drug Addiction, an agency of the European Union, and the report was published in 2009.
Benjamin has been an Honorary Associate at the ESRC Centre for Economic and Social Aspects of Genomics (Cesagen, Cardiff University, UK); and a Visiting Fellow at the Centre for Biomedical Ethics, National University of Singapore (2007 & 2008); University of Queensland (2008); and the Hastings Centre, New York (2005 and 2011).
His primary research interests are in One Health, stem cell science and ethics; and neuroethics, drugs (mis)use and addiction research. His research also focuses on the development of jurisprudential and political theory in the use of human rights concepts in biotechnology and bio-medicine.
Tamra Lysaght (Singapore)
Dr Lysaght is an Assistant Professor at the Centre for Biomedical Ethics at the National University of Singapore. Her research interests lie broadly in the ethical, sociopolitical and regulatory issues surrounding stem cell science and the clinical translation of regenerative medicines and genomics. She has expertise is in empirical ethics and experience in using both qualitative and quantitative research methods. She has worked on policy issues with the Ethics Committee of the Human Genome Organisation, the Technical Working Group on Ethics at the World Health Organization and the Translational Clinical Research Programme of the Institute of Mental Health in Singapore, and the Human Health Division of the International Atomic Energy Agency. She is currently working on the ethics and regulation of cell therapies and translational medicine, genomics and precision medicine, and the ethics of One Health in Singapore.
Professor Ruth Chadwick (UK)
Ruth Chadwick (BA, BPhil, DPhil, LLB, FSB, FRSA, AcSS) was educated at Oxford University, where she studied first for a BA in Literae Humaniores (Greek and Latin Literature and Philosophy), achieving First Class Honours. Following that she studied at Oxford for the B.Phil. in Philosophy, which was awarded in 1976. From 1976-7 Ruth held a lecturer post at Trinity College, Oxford. She then wrote her D.Phil on ‘The ethics of eugenics and genetic engineering’, supervised by Jonathan Glover and a Genetics supervisor, Dr. David Roberts. After leaving Oxford, Ruth taught Philosophy first at Liverpool University, and then at S. Martin’s College Lancaster. While there she studied for a University of London (external) Law degree in her spare time, which was awarded in 1986. In 1987 she moved to Cardiff, where she taught in the Philosophy Department until 1993, when she was appointed to a Chair at the University of Central Lancashire. In 1994 Ruth became Head of the Centre for Professional Ethics at the University. During this period Ruth co-ordinated a number of projects funded by the European Commission, including the EUROSCREEN projects (1992-4; 1996-9) on the ethics of genetic screening. In 2000 Ruth moved to Lancaster University as Professor of Bioethics, where she became Director of the Institute for Environment, Philosophy and Public Policy, before winning, as Principal Investigator, funding from the UK Economic and Social Research Council (ESRC) for the establishment of Cesagen (the Centre for Econonic and Social Aspects of Genomics). The Centre was set up as a collaboration between Cardiff and Lancaster, and in 2006 Ruth moved from Lancaster to the Cardiff site as Distinguished Research Professor with a Link Chair between Cardiff Law School and the School of English, Communication and Philosophy (ENCAP), in addition to being Director of Cesagen. Her publications have focused primarily on issues in genetics, professional ethics, food ethics, and the philosophy of Immanuel Kant, including Ethics, Reproduction and Genetic Control (1987); (with Win Tadd) Ethics and Nursing Practice (1992); (ed.) Kant: Critical Assessments (infour volumes, 1992); (ed.) with Mairi Levitt and Darren Shickle The Right to Know and the Right not to Know (1997); Ruth Chadwick et al. Functional Foods (2003); and over 100 papers in journals and books. She was editor-in-chief of the award winning Encyclopedia of Applied Ethics (1998), of which a second edition has now been published (2011). She co-edits the journal Bioethics and the online journal Life Sciences, Society and Policy and is a member of the editorial boards of 8 other journals, including commissioning editorial member for ethics of the British Medical Bulletin. She is a member of the Council of the Human Genome Organisation (HUGO) and chairs their Committee on Ethics, Law and Society. She has also served as a member of several policy-making and advisory bodies, including the UK Food Ethics Council, 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 is an Academician of the Academy of Social Sciences and a Fellow of the Hastings Center, New York; a Fellow of the Society of Biology; 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.
Yann Joly (Canada)
Yann Joly, Ph.D. (DCL) Ad.E. is a Lawyer Emeritus from the Quebec Bar and the Research Director of the Centre of Genomics and Policies (CGP). He is an Associate Professor at the Faculty of Medicine, Department of Human Genetics cross-appointed at the Bioethics Unit, at McGill University. He is a Research Fellow at the Fonds de recherche du Québec- Santé (FRQS) and an Associate Researcher at the Centre de recherche en droit public at Université de Montréal.
Yann is also the Chair of the Bioethics Workgroup of the International Human Epigenome Consortium (IHEC) and the Chair of the UNESCO and Human Variome Project (HVP) Standards Group. He is the Data Access Officer of the International Cancer Genome Consortium (ICGC) and an ethics and legal consultant in the private sector.
His research activities lie at the interface of the fields of intellectual property, health law (biotechnology and other emerging health technologies) and bioethics. Yann has served as a legal advisor on several research ethics committees. He sits on the editorial committee and acts as a reviewer for a wide range of legal, ethical and scientific publications. He recently received the Quebec Bar Award of Merit (Innovation) for his work on the right to privacy in the biomedical field.
Edison T. Liu, M.D. (USA)
Dr. Liu is the President and CEO of The Jackson Laboratory. Previously, he was the founding executive director of the Genome Institute of Singapore (2001-2011), and has been the President of the Human Genome Organization (HUGO) from 2007-2013. Before 2001, Dr. Liu held leadership positions as the Scientific Director of the National Cancer Institute’s Division of Clinic Sciences (1996-2001), the director of the UNC Lineberger Comprehensive Cancer Center’s Specialized Program of Research Excellence in Breast Cancer, the director of the Laboratory of Molecular Epidemiology at UNC’s School of Public Health, chief of medical genetics, and chair of the Correlative Science Committee of the national cooperative clinical trials group, CALGB. Dr. Liu is an international expert in cancer biology, genomics, human genetics, molecular epidemiology, and translational medicine. He served as a member of Singapore’s Bioethics Advisory Committee from 2003 – 2007 which provided formal advice to Singapore’s parliamentary cabinet. Dr. Liu’s current scientific research is focused on the functional genomics of human cancers, particularly breast cancer, uncovering new oncogenes, and deciphering the dynamics of gene regulation on a genomic scale that modulate cancer biology. He has authored over 300 scientific papers and reviews, and co-authored two books.
Won Bok Lee (South Korea)
Won Bok Lee, MD, LLM, SJD, is a professor at Ewha Law School in Korea. His research focuses on the interaction between law and life science technology, covering biomedical data, privacy, medical product regulation and intellectual property. He has recently been awarded a grant as the principle investigator by the National Research Foundation of Korea for ‘Comparative International Study of Sharing Private Information for Public Benefit: Open Access Genome Projects’.
Won Bok advises the Korean government in various roles, including as a member on the Expert Committee for Human Research Subject Protection under the National Bioethics Committee of Korea. He also oversees the publication of Asia Pacific Journal of Health Law & Ethics as the editor.
Won Bok studied medicine at Seoul National University and, subsequently, law at Harvard Law School. He had also practiced medicine and law before entering academia. He is a member of both the Korean Bar Association and the Korean Medical Association.
Catherine Mills (Australia)
Associate Professor Catherine Mills is an Australian Research Council Future Fellow in the Monash Bioethics Centre at Monash University. Her disciplinary background is philosophy, and she uses feminist philosophy and bioethics to explore ethical issues that arise in human reproduction and genetic technologies. She is particularly interested in issues of power and gender and the ways in which reproductive and genetic technologies impact on women. In her current research, she is looking at the moral responsibilities of women in pregnancy, as well as examining the ethical, social and legal implications of inheritable genetic modification of humans. This includes the implications of technologies such as CRISPR-Cas9 and mitochondrial replacement therapy.
John Mulvihill (USA)
John J. Mulvihill is a medical geneticist with 20 years’ experience at the US National Cancer Institute and the Interinstitute Medical Genetics Program of the National Institutes of Health. In 1990, he founded the Human Genetics Department of the University of Pittsburgh and, in 1998, accepted the Talley Chair of Genetics, University of Oklahoma. A graduate of the College of the Holy Cross, Dartmouth Medical School, and the University of Washington, he was on house staffs at the University of Washington Hospital and Johns Hopkins Hospital. Dr. Mulvihill’s research has focused on the genetics of cancer, especially late reproductive and genetic effects. He has written 341 scientific articles and edited 13 monographs and syllabi and was a member of the Scientific Council of the Radiation Effects Research Foundation, Hiroshima and Nagasaki, and the ELSI Committees of the American College of Medical Genetics and the International Genetic Epidemiology Society. He is on long-term, part-time assignment as medical genetics consultant to the US National Human Genome Research institute.
Hub Zwart (Netherlands)
Hub Zwart (1960) studied philosophy (cum laude) and psychology (cum laude) at Radboud University Nijmegen. He worked as research associate at the Centre for Bioethics (Maastricht, 1988-1992) and defended his thesis in 1993 (cum laude). He was appointed as research director of the Centre for Ethics (Nijmegen, 1992-2000) and acted as editor-in-chief of the Dutch Journal Tijdschrift voor Geneeskunde en Ethiek. In 2000 he became full professor of philosophy at the Faculty of Science. He was European lead of the EU Canada exchange program Coastal Values (1999-2003). In 2004 he became director of CSG and in 2006 he became director of ISIS. The focus of his research is on epistemological and bioethical issues in the life sciences: biomedicine (1988-1996), research with animals (1996-2003), environmental research (1998-2003) and genomics, notably human genomics and ecogenomics (2003-present). Other important research themes are scientific authorship and comparative epistemology (literary imagination as a research tool).
HUGO Committee on Ethics, Law and Society
Advisor to the Committee
Ingrid Winship (Australia)
Prof Winship is a clinician scientist in Clinical Genetics, Cancer Genetics and Dermatology. In 2006 she became the Inaugural Chair of Adult Clinical Genetics at the University of Melbourne and The Royal Melbourne Hospital. She was also at this time appointed as Melbourne Health’s Executive Director of Research and during her 12-year tenure launched the Clinical Trials Research Centre in the city campus. Professor Winship is currently a member of the Victorian Cancer Agency Reference Group and a Director of the Boards of the Australasian College of Dermatologists, the Australian Genome Research Facility and Global Variome. She is Chair of the Australian Health Ethics Committee and a member of the Health Research Strategy External Advisory Group for New Zealand.
HUGO Committee on Ethics, Law and Society
Statements released by the Committee
- Statement on Supreme Court: Genes are not patentable, June 2013
- Statement on Stem Cells, November 2004
- Statement on Human Genomic Database, December 2002
- Statement in Gene Therapy Research, April 2001
- Statement on Benefit Sharing, April 2000
- Statement on Cloning, March 1999
- Statement on DNA Sampling: Control and Access, February 1998
- Statement on the Principled Conduct of Genetics Research, December 1995
HUGO Committee on Ethics, Law and Society
Articles & Useful Links
Imagined Futures: Capturing the Benefits of Genome Sequencing for Society, December 2014
International code of conduct for genomics and health-related data sharing, June 2014
The Human Genome Organisation: towards next generation ethics, April 2013