Volume 19, Issue 5, May 2019, Page 24-26.

Gene editing in the environment must consider uncertainty about potential benefits and risks for different populations and under different conditions. There are disagreements about the weight and balance of harms and benefits. Deliberative and community‐led approaches offer the opportunity to engage and empower diverse publics to co‐create responses and solutions to controversial policy choices in a manner that is inclusive of diverse perspectives. Stories, understood as situated accounts that reflect a person's life experiences, can enable the articulation of nuanced perspectives, (...) diversify how perspectives are communicated, encourage wider participation, open dominant perspectives to challenge, and invite participants to assess appropriate empathy and precaution in collective positions. An emphasis on storytelling in deliberations on gene editing of organisms emphasizes carefully designed recruitment and facilitation to support hearing from a range of perspectives, including those that present a different set of assumptions than those that may be held by experts or other stakeholders, among these, consideration of how to understand our relationships to nature. (shrink)

Genome Canada has funded a research project to evaluate the usefulness of different forms of ethical analysis for assessing the moral weight of public opinion in the governance of genomics. This paper will describe a role of public consultation for ethical analysis and a contribution of ethical analysis to public consultation and the governance of genomics/biotechnology. Public consultation increases the robustness of ethical analysis with a more diverse and rich accounts experiences. Consultation must be carefully and respectfully designed to generate (...) sufficiently diverse and rich accounts of moral experiences. Since dominant groupstend to define ethical or policy issues in a manner that excludes some interests or perspectives, it is important to identify the range of interests that diverse publics hold before defining the issue and scope of a consultation. Similarly, a heavy policy focus and pressures to commercialize products risk oversimplification of the discussion and the premature foreclosure of ethical dialogue. Consequently, a significant contribution of ethical dialogue strengthened by social analysis is to consider the context and non-policy use of power to govern genomics and to sustain social debate on enduring ethical issues. (shrink)

Public participation is increasingly an aspect of policy development in many areas, and the governance of biomedical research is no exception. There are good reasons for this: biomedical research relies on public funding; it relies on biological samples and information from large numbers of patients and healthy individuals; and the outcomes of biomedical research are dramatically and irrevocably changing our society. There is thus arguably a democratic imperative for including public values in strategic decisions about the governance of biomedical research. (...) However, it is not immediately clear how this might best be achieved. While different approaches have been proposed and trialled, we focus here on the use of public deliberation as a mechanism to develop input for policy on biomedical research. We begin by explaining the rationale for conducting public deliberation in biomedical research. We focus, in particular, on the ELS (ethical, legal, social) aspects of human tissue biobanking. The last few years have seen the development of methods for conducting public deliberation on these issues in several jurisdictions, for the purpose of incorporating lay public voices in biobanking policy. We explain the theoretical foundation underlying the notion of deliberation, and outline the main lessons and capacities that have been developed in the area of conducting public deliberation on biobanks. We next provide an analysis of the theoretical and practical challenges that we feel still need to be addressed for the use of public deliberation to guide ethical norms and governance of biomedical research. We examine the issues of: (i) linking the outcomes of deliberation to tangible action; (ii) the mandate under which a deliberation is conducted; (iii) the relative weight that should be accorded to a public deliberative forum vs other relevant voices; (iv) evaluating the quality of deliberation; and (5) the problem of scalability of minipublics. (shrink)

Physician assisted suicide or active euthanasia is analyzed as a medicalization of the needs of persons who are suffering interminably. As with other medicalized responses to personal needs, the availability of active euthanasia will likely divert attention and resources from difficult social and personal aspects of the needs of dying and suffering persons, continuing the pattern of privatization of the costs of caregiving for persons who are candidates for active euthanasia, limiting the ability of caregivers to assist suffering persons to (...) make their continued suffering tolerable, and casting doubt on the voluntariness of the choice of active euthanasia. Keywords: caregivers, euthanasia, family, medicalization, voluntariness CiteULike Connotea Del.icio.us What's this? (shrink)

: Decisions about funding health services are crucial to controlling costs in health care insurance plans, yet they encounter serious challenges from intellectual property protection—e.g., patents—of health care services. Using Myriad Genetics' commercial genetic susceptibility test for hereditary breast cancer (BRCA testing) in the context of the Canadian health insurance system as a case study, this paper applies concepts from social contract theory to help develop more just and rational approaches to health care decision making. Specifically, Daniels's and Sabin's "accountability (...) for reasonableness" is compared to broader notions of public consultation, demonstrating that expert assessments in specific decisions must be transparent and accountable and supplemented by public consultation. (shrink)

This collection of essays by a group of international scholars focuses on specific issues in bioethics and paediatrics. It reflects interdisciplinary approaches to practical problems at the level of policy and practice.

In Michael Stingl argues that the legalization of euthanasia can be made reasonable social policy only in the context of healthcare reform to deliver primary- and community-based care. Stingl accepts that euthanasia and that includes not only pain, but He is not worried The failure of the healthcare system to adequately respond to the needs of people who are suffering with chronic or terminal conditions may lead competent people to elect euthanasia. Stingl argues that it is the institutionalization of care (...) for dying people that reduces their ability to find meaning in prolonged life, and thereby makes it more attractive to consider ending one's life sooner. Options such as palliative care at home that significantly improve quality of life and make euthanasia less attractive are currently only available to those who can privately subsidize healthcare services. If an emphasis is placed on community-based initiatives and well-supported self-help, then there would be less inequality of healthcare and the voluntariness of choices, including euthanasia, would be more equal for all people under the healthcare system. (shrink)

Background Policy decisions about childhood vaccination require consideration of multiple, sometimes conflicting, public health and ethical imperatives. Examples of these decisions are whether vaccination should be mandatory and, if so, whether to allow for non-medical exemptions. In this article we argue that these policy decisions go beyond typical public health mandates and therefore require democratic input.Methods We report on the design, implementation, and results of a deliberative public forum convened over four days in Ontario, Canada, on the topic of childhood (...) vaccination.Results 25 participants completed all four days of deliberation and collectively developed 20 policy recommendations on issues relating to mandatory vaccinations and exemptions, communication about vaccines and vaccination, and AEFI (adverse events following immunization) compensation and reporting. Notable recommendations include unanimous support for mandatory childhood vaccination in Ontario, the need for broad educational communication about vaccination, and the development of a no-fault compensation scheme for AEFIs. There was persistent disagreement among deliberants about the form of exemptions from vaccination (conscience, religious beliefs) that should be permissible, as well as appropriate consequences if parents do not vaccinate their children.Conclusions We conclude that conducting deliberative democratic processes on topics that are polarizing and controversial is viable and should be further developed and implemented to support democratically legitimate and trustworthy policy about childhood vaccination. (shrink)