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HUGO Committee on Ethics, Law and Society (CELS)

“Ten years after the completion of the human genome, looking back over the policy statements of the Human Genome Organisation’s (HUGO) Ethics Committee (EC) and of its Intellectual Property Committee (IPC) is more than just a trip down memory lane; it is the revelation of a seismic shift in the values underlying genomic research.”

 

Bartha Maria Knoppers, Adrian Thorogood and Ruth Chadwick. 2013. The Human Genome Organisation: towards next-generation ethics. Genome Medicine 5:38; https://doi.org/10.1186/gm442

Our Purpose

  • Proactively initiate and facilitate dialogue on the ethical, legal, and social issues related to genetics and genomics, especially those with a global impact.
  • Identify opportunities within HUGO to bring about cultural change within the scientific and clinical communities whose aspirations are for the public good.
  • Promote genomic research that benefits people, communities, and organisations throughout the world.
  • Foster scientific exchange between diverse academic and professional communities.

The HUGO Committee on Ethics, Law and Society (CELS) has the following non-profit objectives:

  • To lead discussion of ethical, legal, and social issues as they relate to the creation and use of knowledge derived from genomic and genetic research.
  • To act as an interface between the scientific and medical communities of HUGO.
  • To collaborate, as appropriate, with other international bodies, primarily in genomics and genetics, and also public health and the natural science, with the goal of sharing knowledge and establishing standards.
  • To provide advice on Ethical, Legal and Social Issues (ELSI) of genomics to the HUGO Board.
  • To disseminate research, opinions and considerations through Statements or other academic mechanisms.

HUGO Committee on Ethics, Law and Society

Committee Members

Benjamin J. Capps Ph.D. (Canada)

Chair

Ben 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).

His primary research interests are in one health, stem cell science and ethics; and neuroethics. His research also focuses on the development of jurisprudential and political theory in the use of human rights concepts in biotechnology and biomedicine.

 

Tamra Lysaght Ph.D. (Singapore)

Vice-Chair

Tamra is Director of Research and Phase Director of the Health ethics, Law and Professionalism (HeLP) program at the Yong Loo Lin School of Medicine, at the Centre for Biomedical Ethics, National University of Singapore.

She has expertise in empirical bioethics and interdisciplinary research on the ethics, regulation, and governance of emerging biomedical research and health technologies. Her work focuses on the ethical, regulatory and policy issues surrounding clinical translation of stem cell research and regenerative medicine, and genomics and precision medicine.

 

 

Professor Ruth Chadwick BA, BPhil, DPhil, LLB, FSB, FRSA, AcSS (UK)

Honorary Member

Ruth is Professor Emerita at Cardiff University and Visiting Professor, University of Leeds.  From 2002-2013 Ruth directed the ESRC Centre for Economic and Social Aspects of Genomics (Cesagen): a Lancaster-Cardiff collaboration.  From 2014-18 she was a member of the Centre for Social Ethics and Policy at the University of Manchester as Professor of Bioethics.

Her research is focussed primarily on issues in genetics, professional ethics, food ethics, and the philosophy of Immanuel Kant, 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.

 

 

Yann Joly Ph.D. (DCL) Ad.E. (Canada)

Yann 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.

His research activities lie at the interface of the fields of intellectual property, health law (biotechnology and other emerging health technologies) and bioethics.

 

 

Won Bok Lee MD, LLM, SJD (South Korea)

Won Bok Lee is a professor at Ewha Law School in Korea.  He 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.

Won Bok’s research focuses on the interaction between law and life science technology, covering biomedical data privacy, medical product regulation and intellectual property.  He has received multiple grants from the National Research Foundation of Korea.

 

Catherine Mills Ph.D. (Australia)

Catherine is Professor of Bioethics and the Director of the Monash Bioethics Centre, Monash University.

Her research addresses ethical, social and regulatory issues in human reproduction, especially at the intersection with genomics and other innovative health technologies.

 

John Mulvihill MD (USA)

John 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. He is on long-term, part-time assignment as medical genetics consultant to the US National Human Genome Research institute.

His research has focused on the genetics of cancer, especially late reproductive and genetic effects.

 

William S. Oetting Ph.D. (USA)

William is a human geneticist in the Department of Experimental and Clinical Pharmacology, College of Pharmacy, University of Minnesota.

His research focus is to identify genetic variation associated with single gene and complex human diseases and phenotypes. His research areas included identifying genetic variation associated with the pigment disorder albinism and in the identification of genetic variants associated with various clinical outcomes in individuals who have received a kidney allograft, including pharmacogenomic related outcomes for immunosuppressants. He has a long-standing interest in how genetic information and genetic related technology impacts society.

 

Hub Zwart (Ph.D.) (Netherlands)

Hub became full Professor of Philosophy at the Faculty of Science RU Nijmegen in 2000, and in 2018 he was appointed as Dean of Erasmus School of Philosophy (Erasmus University Rotterdam).

In his research he develops a continental philosophical perspective (dialectics, psychoanalysis, phenomenology) on contemporary technoscience (genomics, synthetic biology, brain research, environmental research). Special attention is given to genres of the imagination (novels, plays, poetry) in research and education.

 

 

Kunal Sanghavi M.S., CGC (USA)

Kunal is the Program Manager, Genetic Counseling @ The Jackson Laboratory.

 

 

Ingrid Winship MB ChB, MD, FRACP, FACD, FAICD (Australia)

Ingrid 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.

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

HUGO Statements

 

HUGO Intellectual Property Committee

 

Other Organizations

  • Regulatory and Ethics Working Group, Global Alliance for Genomics & Health: International code of conduct for genomics and health-related data sharing, June 2014 [The HUGO Journal 8, 1 (2014). https://doi.org/10.1186/1877-6566-8-1]

 

Reports

Capps, B., Chadwick, R. (Chair), Chalmers, D., Clarke, A., Clayton, E.W., Liu, E. (President of HUGO, Co-chair), Lysaght, T., Mulvihill, J. and Winslett, M. Dated 2013, published online December 2014. Imagined Futures: Capturing the Benefits of Genome Sequencing for Society. Report prepared by the working group of the HUGO Committee on Ethics, Law and Society. pp. 62. Available

 

Articles

Capps, B., Mulvihil, J., Joly, Y., and Lysaght, T., and the HUGO Committee on Ethics, Law and Society. 2018. Open Peer Commentary: The View of CRISPR Patents through the Lens of Solidarity and the Public Good. American Journal of Bioethics 18(12): 54-56.

Capps, B., Chadwick, R., Joly, Y., Mulvihill, J., Lysaght, L. and Zwart, H. 2017. Falling Giants and the Rise of Gene Editing: Ethics, Private Interests and the Public Good. Human Genomics 11:20; DOI 10.1186/s40246-017-0116-4.

Mulvihill, J. Capps, B., Joly, J. Lysaght, T., Zwart, H. and Chadwick, R. The International Human Genome Organisation (HUGO) Committee of Ethics, Law, and Society (CELS). 2017. Ethical Issues of CRISPR Technology and Gene Editing through the Lens of Solidarity. British Medical Bulletin 122(1): 109-122.

Knoppers, B., Thorogood, A. and Chadwick, R. 2013. The Human Genome Organisation: Towards next-generation ethics. Genome Medicine 5:38; http://genomemedicine.com/content/5/4/38

Wertz, D. and Knoppers, B. 2003. The HUGO Ethics Committee: Six innovative statement. New Review of Bioethics 1: 27-40, DOI: 10.1080/1740028032000131404.

Knoppers, B. Chadwick, R., Takebe, H., Berg, K., Cantu, J., Daar, A., Engels, E., Kirby, M., Macer, D., Murray, T., Qiu, R., Verma, I. and Wertz, D. 2000. HUGO Urges Genetic Benefit-Sharing. Community Genetics 3(2): 88-92

Links

Global Variome/ The Human Variome Project [https://www.humanvariomeproject.org/]

Global Alliance for Genomics and Health (GA4GH) [https://www.ga4gh.org/]

 

 

 

 

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August 16, 2021 | Uncategorized

Human Genome Meeting (HGM) is a series of annual conferences organized by the Human Genome Organisation (HUGO). It started as…

humangenomeorg

The team is growing super fast! We’ve had a fantastic influx of staff and of course, had to organise a Sleeky photoshoot with our in-house photographer to celebrate our fresh faces.

Please meet Jane, Urooj, Jack and Emily (not pictured as self-isolating got in the way!)

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