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ABSTRACT: The goal of this study was to provide an ethics education resource for trainees and researchers in the Canadian Stem Cell Network that would address the multiple ethical challenges in stem cell research including accountability in and for research across its multiple dimensions. The website was built using a bottom-up type approach based on an ethics needs assessment in combination with a top-down expert-driven component. There have been 3,615 visitors to the website since it was launched in July, 2011. The ongoing rate of returning visitors (20%) indicates that the website is becoming a valuable tool used multiple times.
Accountability in Research Policies and Quality Assurance 01/2013; 20(2):107-26.
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ABSTRACT: Many are supportive of approaches that incorporate lay citizens into policy making and risk management decisions. However, a great deal of learning must first take place about how citizen engagement for controversial topics is best accomplished. Online risk communication efforts are increasing in popularity but there is little empirical evidence accrued to demonstrate the effectiveness of such methods. The intention of our overall study is to create a powerful method for in-depth two-way communication with the public and expert communities about complex and sensitive issues at the heart of stem cell (SC) research. The fundamental objective is to raise awareness of SC science with lay citizens by fostering more holistic or "all things considered" ethical judgments. Our risk communication study demonstrates that lay citizens are both interested in, and capable of learning about, complex scientific issues provided the right tools are used to convey information and assess understanding. Our results show that it is worth the time and effort for SC researchers to continue posting podcasts and FAQ's about their work for non-expert communities to view. In addition, despite having increased our participants' risk perceptions about induced pluripotent stem (iPS) cell research, almost all were very supportive of this type of research in Canada by the end of the survey. In other words, participants understood that this research did in fact pose some risks and learned a great deal about both the risks and benefits of iPS cell research, and still thought this research was worthwhile to pursue.
Stem cell reviews 09/2012; · 5.08 Impact Factor
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ABSTRACT: There is near universal recognition that human participant protection is both morally and practically essential for all forms
of research involving humans. Yet most of the discourse around human participant protection has focussed on norms—rules, regulations
and governance arrangements—rather than on the actual effectiveness of these norms in achieving their ends—protecting participants
from undue risk and ensuring respectful treatment as well as advancing the generation of useful knowledge. In recent years
there has been increasing advocacy for evidence-based human participant protection that would be grounded on the careful investigation
of the effects of research on human participants. We offer an analysis of evidence-based protection and then focus on Canadian
examples of research on evidence-based protection. We consider the prospects for such research being put into practice in
Canada. Finally we connect our remarks to the theme of “the changing landscape of human participant protection.”
Journal of Academic Ethics 04/2012; 7(1):1-16.
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ABSTRACT: Research on research integrity is an important element in building a strong national research integrity framework. There is a lack of empirical evidence and conceptual research on research integrity in Canada. To further strengthen and develop our system of research integrity, we believe that greater support is needed to promote research on research integrity. Research on research integrity is imperative in order to gain a richer understanding of the diversity of responsible conduct of research norms, practices, education and policies from a Canadian perspective. The knowledge gained would help in the development of an evidenced-based and responsive Canadian system of research integrity.
Accountability in Research Policies and Quality Assurance 01/2012; 19(1):47-52.
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Timothy Caulfield,
Amy Zarzeczny,
Jennifer McCormick,
Tania Bubela,
Christine Critchley,
Edna Einsiedel,
Jacques Galipeau,
Shawn Harmon,
Michael Huynh,
Insoo Hyun, [......],
Geoff Lomax,
Holly Longstaff, Michael McDonald,
Charles Murdoch,
Ubaka Ogbogu,
Jason Owen-Smith,
Shaun Pattinson,
Shainur Premji,
Barbara von Tigerstrom,
David E Winickoff
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ABSTRACT: Few areas of recent research have received as much focus or generated as much excitement and debate as stem cell research. Hope for the therapeutic promise of this field has been matched by social concern associated largely with the sources of stem cells and their uses. This interplay between promise and controversy has contributed to the enormous variation that exists among the environments in which stem cell research is conducted throughout the world. This variation is layered upon intra-jurisdictional policies that are also often complex and in flux, resulting in what we term a 'patchwork of patchworks'. This patchwork of patchworks and its implications will become increasingly important as we enter this new era of stem cell research. The current progression towards translational and clinical research among international collaborators serves as a catalyst for identifying potential policy conflict and makes it imperative to address jurisdictional variability in stem cell research environments. The existing patchworks seen in contemporary stem cell research environments provide a valuable opportunity to consider how variations in regulations and policies across and within jurisdictions influence research efficiencies and directions. In one sense, the stem cell research context can be viewed as a living experiment occurring across the globe. The lessons to be gleaned from examining this field have great potential for broad-ranging general science policy application.
Stem cell reviews 07/2009; 5(2):82-8. · 5.08 Impact Factor
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ABSTRACT: This paper describes findings from an ethics education project funded by the Canadian Stem Cell Network (SCN). The project is part of a larger research initiative entitled "The Stem Cell Research Environment: Drawing the Evidence and Experience Together". The ethics education study began with a series of focus groups with SCN researchers and trainees as part of a "needs assessment" effort. The purpose of these discussions was to identify the main ethical issues associated with stem cell (SC) research from the perspective of the stem cell community. This paper will focus on five prominent themes that emerged from the focus group data including: (1) the source of stem cells; (2) the power of stem cells; (3) working within a charged research environment; (4) the regulatory context; and (5) ethics training for scientists. Additional discussions are planned with others involved in Canadian stem cell research (e.g., research ethics board members, policy makers) to supplement initial findings. These assessment results combined with existing bioethics literature will ultimately inform a web-based ethics education module for the SCN. We believe that our efforts are important for those analyzing the ethical, legal, and social issues (ELSI) in this area because our in depth understanding of stem cell researcher perspectives will enable us to develop more relevant and effective education material, which in turn should help SC researchers address the important ethical challenges in their area.
Stem cell reviews 07/2009; 5(2):89-95. · 5.08 Impact Factor
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Timothy Caulfield,
Amy Zarzeczny,
Jennifer McCormick,
Tania Bubela,
Christine Chritchley,
Edna Einsiedel,
Jacques Galipeau,
Shawn Harmon,
Michael Huynh,
Insoo Hyun, [......],
Geoff Lomax,
Holly Longstaff, Michael McDonald,
Charles Murdoch,
Ubaka Ogbogu,
Jason Owen-Smith,
Shaun Pattinson,
Shainur Premji,
Barbara von Tigerstrom,
David E. Winickoff
Nature Reports Stem Cells. 04/2009;
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ABSTRACT: TRUST IS FUNDAMENTAL in health research, yet there is little empirical evidence that explores the meaning of trust from the perspective of human subjects. The analysis presented here focuses on how human subjects talked about trust in the in-depth interviews. It emerged from the accounts that trust could not be assumed in the research setting, rather it was portrayed as a dynamic concept, built and easily broken, characterized by reciprocity and negotiation. Human subjects were ambivalent about who, when, what, and how much to trust in the research endeavor. This paper adds a fresh perspective to the literature on trust, and so offers a currently neglected, and little understood dimension to the discourse around health research ethics.
Journal of Empirical Research on Human Research Ethics 01/2009; 3(4):35-47. · 1.27 Impact Factor
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ABSTRACT: To review processes of resource allocation and the ethical considerations relevant to the fair allocation of a limited number of cochlear implants to increasing numbers of potential recipients.
Review of relevant considerations.
Tertiary referral hospital.
Editorial discussion of the ethical issues of resource allocation.
Heterogeneity of audiometric thresholds, self-reported disability of hearing loss, age of the potential cochlear implant recipient, cost-effectiveness, access to resources, compliance with follow-up, social support available to the recipient, social consequences of hearing impairment, and other recipient-related factors.
In a publicly funded health care system, there will always be a need for decision-making processes for allocation of finite fiscal resources. All candidates for cochlear implantation deserve fair consideration. However, they are a heterogeneous group in terms of needs and expected outcomes consisting of traditional and marginal candidates, with a wide range of benefit from acoustic amplification.
We argue that implant programs should thoughtfully prioritize treatment on the basis of need and potential benefit. We reject queuing on the basis of "first-come, first-served" or on the basis of perceived social worth.
Journal of otolaryngology - head & neck surgery = Le Journal d'oto-rhino-laryngologie et de chirurgie cervico-faciale 05/2008; 37(2):250-5. · 0.71 Impact Factor
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Timothy Caulfield,
Ubaka Ogbogu,
Erin Nelson,
Edna Einsiedel,
Bartha Knoppers, Michael McDonald,
Fern Brunger,
Robin Downey,
Kanchana Fernando,
Jacques Galipeau, [......],
David Magnus,
Debra J H Mathews,
Matthew Nisbet,
Jeffrey Nisker,
Guillaume Pare,
Shaun Pattinson,
Daryl Pullman,
Michael Rudnicki,
Bryn Williams-Jones,
Susan Zimmerman
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ABSTRACT: This article is a consensus statement by an international interdisciplinary group of academic experts and Canadian policy-makers on emerging ethical, legal and social issues in human embryonic stem cells (hESC) research in Canada. The process of researching consensus included consultations with key stakeholders in hESC research (regulations, stem cell researchers, and research ethics experts), preparation and distribution of background papers, and an international workshop held in Montreal in February 2007 to discuss the papers and debate recommendations. The recommendations provided in the consensus statement focus on issues of immediate relevance to Canadian policy-makers, including informed consent to hESC research, the use of fresh embryos in research, management of conflicts of interest, and the relevance of public opinion research to policy-making.
Journal of obstetrics and gynaecology Canada: JOGC = Journal d'obstetrique et gynecologie du Canada: JOGC 11/2007; 29(10):843-8.
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Journal of Empirical Research on Human Research Ethics 04/2007; 2(1):94-5. · 1.27 Impact Factor
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ABSTRACT: Veterinarians frequently encounter situations that are morally charged and potentially difficult to manage. Situation involving euthanasia, end-of-life care, economics, and inadequate provision of care create practical and moral dilemmas. Ethical tension may be attributable to differences in beliefs regarding the moral value of animals, client and veterinary responsibilities, and deciding what is best for an animal. Veterinarians can employ communication skills used in medical situations to explore the reasons underpinning ethical dilemmas and to search for solutions with clients, staff, and colleagues.
Veterinary Clinics of North America Small Animal Practice 02/2007; 37(1):165-79; abstract x. · 1.64 Impact Factor
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The Journal of Law Medicine & Ethics 01/2007; 32(2):365 - 368. · 1.22 Impact Factor
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Health law review 02/2005; 13(2-3):97-106.
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ABSTRACT: The Three Rs are the main principles used by Animal Ethics Committees in the governance of animal experimentation, but they appear not to cover some ethical issues that arise today. These include: a) claims that certain species should be exempted on principle from harmful research; b) increased emphasis on enhancing quality of life of research animals; c) research involving genetically modified (GM) animals; and d) animals bred as models of disease. In some cases, the Three Rs can be extended to cover these developments. The burgeoning use of GM animals in science calls for new forms of reduction through improved genetic modification technology, plus continued attention to alternative approaches and cost-benefit analyses that include the large numbers of animals involved indirectly. The adoption of more expanded definitions of refinement that go beyond minimising distress will capture concerns for enhancing the quality of life of animals through improved husbandry and handling. Targeting refinement to the unpredictable effects of gene modification may be difficult; in these cases, careful attention to monitoring and endpoints are the obvious options. Refinement can also include sharing data about the welfare impacts of gene modifications, and modelling earlier stages of disease, in order to reduce the potential suffering caused to disease models. Other issues may require a move beyond the Three Rs. Certain levels of harm, or numbers and use of certain species, may be unacceptable, regardless of potential benefits. This can be addressed by supplementing the utilitarian basis of the Three Rs with principles based on deontological and relational ethics. The Three Rs remain very useful, but they require thoughtful interpretation and expansion in order for Animal Ethics Committees to address the full range of issues in animal-based research.
Alternatives to laboratory animals: ATLA 12/2004; 32(5):525-32. · 1.58 Impact Factor
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The Journal of Law Medicine & Ethics 02/2004; 32(2):365-8. · 1.22 Impact Factor
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Michael McDonald
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ABSTRACT: The desire to be treated with dignity, particularly at the end of one's life, is a fairly universal preference found in most cultures. Such treatment requires positive actions of respect in the behaviour of others toward the dying and the dead. It also involves negative actions, particularly refraining from doing "dignatory harms" to the dead and the dying. Yet it is not always easy for clinicians and researchers who deal with the dying and dead to decide on appropriate action or inaction. I suggest that such decision making can be helped by locating the dying person along three dimensions: the personal, the familial, and the cultural. These elements are interrelated in complex ways that need to be unpacked in context. Thus, one person may locate herself within a familial context while a sibling may locate himself against that context. While locating individuals along the three dimensions suggested does not "solve" ethical problems, it should help clinicians in understanding and dealing more compassionately with the dead, the dying, their families, and their communities.
Journal of palliative care 02/2004; 20(3):163-70. · 0.93 Impact Factor
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Susan Sherwin,
Françoise Baylis,
Alan Bernstein,
Timothy Caulfield,
Bernard Dickens,
Jocelyn Downie,
Bartha Knoppers,
Thérèse Leroux,
Neil MacDonald, Michael McDonald,
Janet Storch,
Charles Weijer
Charles Weijer.
