Centring the Human Subject in Health Research: Understanding the Meaning and Experience of Research Participation
CAE/BC BioLibrary Project: Guidelines, Protocols and Policies
Currently, there is no Canadian legislation specific to biobanks. National and international guidelines, case law, and federal/provincial laws drafted for other purposes and often in conflict with public interests (better health outcomes) and researchers needs (access to high-quality tissues and data) litter the landscape, leaving unresolved serious concerns involving informed consent, confidentiality, secondary use of samples, and data and benefit sharing (Swede, 2007; Cambon-Thomsen, 2004). This project will address this policy “confusion” by building on original work by the Centre for Applied Ethics and the BC BioLibrary in the area of biobanks and deliberative democracy.
Applied Genomics Innovation Projects
- Genomic Studies of Explosives Biodegradation
- Genomic Approaches to Microbial Community Monitoring as a Forest Management Tool
- The Development of Genomic Tools for Monitoring and Improving Passive Mitigation of Mine Drainage
Developing Ethical and Regulatory Guidelines for Research on the Human Microbiome and its Applications: Speaking to the Experts and Stakeholders
The Centre is an interdisciplinary research centre which studies a diverse range of topics, including healthcare practices, business and professional procedures, new information technologies and environmental issues.
Peter Danielson [Web Page]
Mary & Maurice Young Professor of Applied Ethics
Dr. Danielson's research develops and deploys computational (evolutionary and agent based) and other modeling techniques to problems of ethical mechanism design: adapting social conventions (moralities) to technology driven change. See Evolving Artificial Moral Ecologies and these papers for the models. Dr. Danielson's recent applied research focuses on the ethics of new technology: Modeling Democracy, Ethics, & Genomics and the Robot Ethics Lab.
Michael Burgess [Web Page]
Dr. Burgess is primarily interested in theoretical development in concert with application to practical problems. His early work was focused on issues of consent, dying, new reproductive technologies, qualifications and training of health care ethics consultants, cross-cultural ethics, the use of qualitative methods in ethical analysis, and genetic testing. His current research is funded by Genome Canada to develop approaches to involving publics and experts to understanding the full range of ethical and social issues related to genomics and biotechnology. He offers graduate seminar to students from science, social sciences, humanities, journalism, law and the health professions on how to combine ethical and social analyses.
Michael McDonald [Web Page]
Professor Emeritus and Inaugural Maurice Young Chair in Biomedical Ethics
Dr. McDonald’s current interests include the ethics of research involving humans (he was a member of the Tri-Council Working Group on Ethics, a federally commissioned body that recommended major changes to Canada’s rules for research involving human subjects (see the Code of Conduct for Research Involving Humans), cross-cultural health care ethics, and most recently the governance or oversight of Canadian biomedical research involving human subjects for the Law Commission of Canada (The Governance of Health Research Involving Human Subjects).
Susan M. Cox [Web Page]
Michael Smith Foundation for Health Research Scholar (2003/2008)
Dr. Cox is currently conducting a three-year CIHR-funded study on ‘appropriate’ uses of genetic information in the diagnosis, treatment and prevention of rheumatoid arthritis and Autosomal Dominant Polycystic Kidney Disease. The goal is to describe, from the perspectives of diverse stake–holders, the benefits, harms and other implications of the current (and foreseeable future) uses of genetic information in the diagnosis, treatment and prevention of these two diseases. She also is a co-PI with Jeffrey Nisker (Schulich School of Medicine, University of Western Ontario) on a project that uses live theatre as an innovative tool for engaging citizen participation in health policy development. In addition she collaborates on a Genome Canada study on democracy and processes of public engagement in policy–making in genomics (Dr. Michael Burgess, PI), and is a mentor in the Ethics of Health Research and Policy Training Program (Dr. Michael McDonald, PI), which builds research and professional capacity in ethical aspects of health research and policy in Canada, at both the doctoral and postdoctoral levels.
David Fraser, C.M. [Web Page]
Senior Research Fellow and Professor, Animal Welfare Program, Faculty of Land and Food Systems
Dr. Fraser holds a joint appointment in the Centre for Applied Ethics.
Dr. Fraser's recent research has involved studying the behaviour of sows and piglets in relation to birth, lactation, and weaning. At UBC he and Dr. Dan Weary have launched a wide-ranging Animal Welfare Program. Components will include the management and housing of farm and laboratory animals, and the assessment of animal well-being through the study of animals' behaviour and environmental preferences. He is also working with students and specialists in philosophy and the social sciences to study how the welfare of animals is affected by cultural and economic factors, the law, and international trade.
Daniel M. Weary [Web Page]
NSERC Industrial Research Chair in Animal Welfare and Professor, Agroecology, Faculty of Land and Food Systems
Dr. Weary's work in the Animal Welfare Program focuses on developing behavioural and other non-invasive measures for the objective assessment of aspects of animal well-being. He is especially interested in dairy cattle and the welfare issues important in this species. In particular, he is pursuing work on improving housing for both the lactating cow and the young calf, reducing the stress of separation on both the cow and calf, lessening the impact of weaning on calves and reducing the pain and distress experienced during dehorning and other procedures.