Search results

The medical profession is in a crisis due to the increasing awareness of pluralism and the rejection of "community standards of practice" as a principle ethically and legally sufficient to govern medical practice. Historically, professional peer-review and appeals to local medical community standards of practice have been the basis for managing legal and ethical disputes. It was rare for patients or courts to challenge the authority and autonomy of the profession. This was the legacy of an earlier, less pluralistic society. Monolithic societies have a common or authoritative set of moral values, usually founded on a religious structure and institution, so that the moral limits of any type of practice, including medical practice, are well understood. We no longer live in such a society.

Beginning with the discovery of the structure of DNA, genomic sciences have expanded rapidly, and in recent years we have begun to see the products of this vast research effort translated into technologies that are beginning to impact healthcare, food production, ecosystem management and environmental remediation. While transgenic applications of genomic sciences have been controversial at times, other applications such as genetic testing have been considered more acceptable. Applications within the life sciences to improving our understanding of the processes of speciation and for exploring the role and function of genes in response to environmental change have also been valuable. It is also true to say that the gene has assumed mythical qualities in late modernity and it has an alluring mystique (Nelkin & Lindee, 2004) with broader social and political meaning loaded onto a scientific classification (Tansey & Burgess, forthcoming). Somewhat ironically, perhaps, while scientists increasingly seek to downplay the concept of genetic determinism and emphasise gene-environment interactions, proteomics and epigenetics, the concept of genetic determinism has established strong roots in popular culture and the media (Bates, 2005).

RDX is an explosive that is also a neurotoxin and implicated in adverse health outcomes. Because of its widespread use in military and civilian operations, there is growing concern about potential environmental and health implications. One promising method of bioremediation involves genomic studies of soil microbes. These health concerns and technological issues intersect with social and political dimensions raising questions about public responses to genomic technologies and the degree of environmental accounting expected from the military. In cases of novel technologies entering into contested social spaces, public engagement can be useful to inform broader policy debates. Building on previous work, in this article, we outline the rationale, methods, and results of a public deliberation on these issues. To our knowledge, this is the first study of its kind on the issues of RDX pollution and microbial genomics, and thus provides an important baseline on public sentiment on these issues.

IntroductionResearch using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK).
Objectives and methodsThis paper describes the results of a public deliberation event held in April 2018 in Vancouver, British Columbia. The purpose of this event was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research with a focus on the processes and regulations employed to release data. The event brought together 23 members of the public over two weekends.
ResultsParticipants developed and voted on 19 policy-relevant statements. Voting results and the rationale behind any disagreements are reported here. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use.
ConclusionsGenerally, participants were supportive of research using linked data because of the value they provide to society. Participants expressed a desire to see the data access request process made more efficient to facilitate more research, as long as there are adequate protections in place around security and privacy of the data.

Background: Spending on cancer drugs has risen dramatically in recent years compared to other areas of health care, due in part to higher prices associated with newly approved drugs and increased demand for these drugs. Addressing this situation requires making difficult trade-offs between cost, harms, and ability to benefit when using public resources, making it important for policy makers to have input from many people affected by the issue, including citizens. Methods: In September 2014, a deliberative public engagement event was conducted in Vancouver, British Columbia (BC), on the topic of priority setting and costly cancer drugs. The aim of the study was to gain citizens' input on the topic and have them generate recommendations that could inform cancer drug funding decisions in BC. A market research company was engaged to recruit members of the BC general public to deliberate over two weekends (four days) on how best to allocate resources for expensive cancer treatments. Participants were stratified based on the 2006 census data for BC. Participants were asked to discuss disinvestment, intravenous versus oral chemotherapy delivery, and decision governance. All sessions were audio recorded and transcribed. Transcripts were analyzed using NVivo 11 software. Results: Twenty-four individuals participated in the event and generated 30 recommendations. Participants accepted the principle of resource scarcity and the need of governments to make difficult trade-offs when allocating health-care resources. They supported the view that cost-benefit thresholds must be set for high-cost drugs. They also expected reasonable health benefits in return for large expenditures, and supported the view that some drugs do not merit funding. Participants also wanted drug funding decisions to be made in a non-partisan and transparent way. Conclusion: The recommendations from the Vancouver deliberation can provide guidance to policy makers in BC and may be useful in challenging pricing by pharmaceutical companies. ; Medicine, Faculty of ; Southern Medical Program (Okanagan) ; Other UBC ; Non UBC ; Population and Public Health (SPPH), School of ; Reviewed ; Faculty

Large-scale population biobanks, which aim to collect biological tissues, personal health information, and genomic data, are being introduced worldwide with the promise of increasing knowledge on chronic diseases such as diabetes and heart disease. Experts recognize the need for public participation to address the many social, legal and ethical complexities raised by the introduction of biobanks for public health research. However many researchers and decision makers struggle with how to promote public participation. This paper presents six issues that public participation must address. These issues are then applied to three large scale genetic biobank projects: CARTaGENE, Generation Scotland, and the United Kingdom Biobank. Finally, the efforts of these biobanks will be compared to the British Columbia Biobank deliberation project, which implemented a deliberative public participation experiment on biobanking.

Public trust is critical in any project requiring significant public support, both in monetary terms and to encourage participation. The research community has widely recognized the centrality of public trust, garnered through community consultation, to the success of large-scale epidemiology. This paper examines the potential utility of the deliberative democracy methodology within the public health research setting. A deliberative democracy event was undertaken in Tasmania, Australia, as part of a wider program of community consultation regarding the potential development of a Tasmanian Biobank. Twenty-five Tasmanians of diverse backgrounds participated in two weekends of deliberation; involving elements of information gathering; discussion; identification of issues and formation of group resolutions. Participants demonstrated strong support for a Tasmanian Biobank and their deliberations resulted in specific proposals in relation to consent; privacy; return of results; governance; funding; and, commercialization and benefit sharing. They exhibited a high degree of satisfaction with the event, and confidence in the outcomes. Deliberative democracy methodology is a useful tool for community engagement that addresses some of the limitations of traditional consultation methods. ; Other UBC ; Non UBC ; Reviewed ; Faculty

Public trust is critical in any project requiring significant public support, both in monetary terms and to encourage participation. The research community has widely recognized the centrality of public trust, garnered through community consultation, to the success of large-scale epidemiology. This paper examines the potential utility of the deliberative democracy methodology within the public health research setting. A deliberative democracy event was undertaken in Tasmania, Australia, as part of a wider program of community consultation regarding the potential development of a Tasmanian Biobank. Twenty-five Tasmanians of diverse backgrounds participated in two weekends of deliberation; involving elements of information gathering; discussion; identification of issues and formation of group resolutions. Participants demonstrated strong support for a Tasmanian Biobank and their deliberations resulted in specific proposals in relation to consent; privacy; return of results; governance; funding; and, commercialization and benefit sharing. They exhibited a high degree of satisfaction with the event, and confidence in the outcomes. Deliberative democracy methodology is a useful tool for community engagement that addresses some of the limitations of traditional consultation methods.