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)
: 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)
A concept of diversity is an understanding of what makes a group diverse that may be applicable in a variety of contexts. We distinguish three diversity concepts, show that each can be found in discussions of diversity in science, and explain how they tend to be associated with distinct epistemic and ethical rationales. Yet philosophical literature on diversity among scientists has given little attention to distinct concepts of diversity. This is significant because the unappreciated existence of multiple diversity concepts can (...) generate unclarity about the meaning of “diversity,” lead to problematic inferences from empirical research, and obscure complex ethical-epistemic questions about how to define diversity in specific cases. We illustrate some ethical-epistemic implications of our proposal by reference to an example of deliberative mini-publics on human tissue biobanking. (shrink)
Salmon genomics is an emerging field that represents a convergence between socially important scientific innovation and a politically volatile topic of significant interest to the public. These factors provide a strong rationale for public input. This report describes such input from a public engagement event based on the principles of deliberative democracy. The event involved a random, demographically stratified sample of 25 British Columbians . While some participants opposed sequencing the salmon genome on principle, on the whole participants responded favourably, (...) citing the value of increased knowledge of human impacts on salmon, potentially slowing or reversing this impact, and assisting sustainable management of salmon resources. Participants discussed many of the potential implications of the sequencing project and formulated recommendations pertaining to regulations, international treaties, public education and engagement. Overall, the project illustrates that the specific design and implementation of this event is capable of producing sound policy advice from the general public on genomic-related issues. (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)
The original version of this article unfortunately contained a mistake. The fourth author’s name is Bianca Crewe, not Bianca Crew. The original article has been corrected.
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)
