Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

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

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)

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)

Biobanks are increasingly being created specifically for research purposes. Concomitantly, we are seeing significant and evolving shifts in research ethics in relation to biobanking. Three discrete shifts are identified in this article. The first extends the ethical focus beyond the protection of human subjects to the promotion of broader community benefits of research utilizing biobanked resources, and an expectation that these benefits will be shared. The second involves the evolution of the traditional consent paradigm for future research uses of biobanks (...) resources that are not in contemplation at the time of donation. The third involves a move away from single project management to more dynamic governance accountability to research participants and the public. These shifts may take different local and institutional forms but share common recognizable elements. (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)

This research investigates flow experiences and explores meaning construction for artistic practices that differ in haptic nature. In addition to the phenomenological analysis of interviews, videos of artistic practice and practice-based research were employed to obtain both retrospective and real-time records of the physicality of artistic practice. Drawing on authors who emphasise the automatisation of actions in flow and heightened body awareness flow is reconceptualised in non-representational terms as optimal precognitive engagement with the world. In this light meaning in flow (...) results not from bringing order to the mind as Csikszentmihalyi proposed, but through its embodied construction in activity. Analyses revealed that the sources of enjoyment and meaning, the relationship between artist, tools and artwork, and the nature and extent of self-differentiation differ between artists who work in two and three dimensions, and whose physical actions differ in the production of their artwork. 2D artists derive enjoyment from their creative process and meaning from capturing an atmosphere or place, and attribute artistic control to their artwork. 3D artists derive more enjoyment from the product of their artistic activity and meaning from the recreation of the self in material form, and do not attribute artistic control to the artwork. Consequently, embodied physicality of activity appears fundamental to similarities in flow experiences and meaning-making: accounts of flow and the meanings generated in activity differ between activities that differ in their haptic or performative nature but are similar among haptically similar activities. (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)

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 (Canada). 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)

The ethical theories employed in health care today assume, in the main, a modern Western philosophical framework. Yet the diversity of cultural and religious assumptions regarding human nature, health and illness, life and death, and the status of the individual suggest that a cross-cultural study of health care ethics is needed. A Cross-Cultural Dialogue on Health Care Ethics provides this study. It shows that ethical questions can be resolved by examining the ethical principles present in each culture, critically assessing each (...) value, and identifying common values found within all traditions, It encourages the development of global awareness and sensitivity to and respect for the diversity of peoples and their values and will advance understanding as well as help to foster a greater balance and a fuller truth in consideration of the human condition and what makes for health and wholeness. (shrink)

Religion, spirituality, and contemporary shamanic practice in Scotland : exploring the relationships -- The impacts of transformational cultural change on religion and spirituality -- Seeking a new definition of religion -- What is shamanism? -- A case study of three shamanic practice groups in Scotland -- Exploring connections between cross-cultural shamanic elements and neo-shamanic expressions in Scotland : interviews, participant observation, and analysis -- Applying Hervieu-Lger's analytical model of religion to reveal a lineage of spirituality, not belief, in the shamanic (...) chain of memory -- Patterns, conclusions, and resulting issues -- Seeing differently : a new paradigm of spirituality and religion. (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 lieu of an abstract, here is a brief excerpt of the content:Ethan’s GiftMichelle BurgessEthan was your average boy next door. He loved everything most 8–year–old boys do including playing baseball, swimming, and watching his favorite baseball team, the Philadelphia Phillies.On December 3rd 2008, life for our family changed forever when Ethan was diagnosed with Diffuse Intrinsic Pontine Glioma, a rare inoperable brainstem tumor. DIPG is in essence a death sentence. There are no survivors and life expectancy after diagnosis is (...) only 9–12 months. Our family was devastated.For the next 14 months, we lived life to the fullest, never taking a single moment or day for granted. As Ethan’s condition worsened, and it became clear that he was close to passing, I spoke with Ethan’s doctor about my desire to be able to donate Ethan’s corneas and his brain tumor for research. He informed me that because of Ethan’s type of tumor that he may be a candidate for donation of other organs as well if that is something we wanted to do.Knowing that there was nothing we could do to save Ethan, it was something that we felt we could do to help others so we decided to explore the option of donating Ethan’s other organs. We were put in contact with the Gift of Life.Two representatives from Gift of Life came to our home and discussed at length with us what would have to happen to make organ donation possible at the time of Ethan’s passing. Specifically that Ethan would have to pass away at the hospital and in the operating room. This was very different than the hospice environment that we had planned. They also had told us that Ethan was only the second young person that they had ever dealt with that the families had planned ahead of time to donate organs. The other person was a teenager who planned his own organ donation.On January 26th 2010, Ethan’s pain had become unmanageable at home and his breathing had become very labored. I spoke with his oncologist and he advised me to bring Ethan to the hospital to try and get his pain under control.We loaded Ethan up in the car for the one–hour car ride to the hospital. On the way to the hospital Ethan fell asleep while being cuddled by me in the backseat. When we arrived at the hospital we noticed that his fingers and toes had turned purple. The nurses immediately checked his oxygen and it had fallen to only 10 %.The doctors advised that he had slipped into a coma in the car, one that he would never awake from. He was immediately placed on life support. A scan was done and it was evident that the progressing tumor was placing pressure on the areas of the brain that controlled basic life functions such as breathing. Ethan could not recover.The decision was made to begin to look for recipients for Ethan’s organs. Because Ethan had not reached the point of brain death, his donation would have to be a post cardiac death transplant, meaning, life support would be removed, when his heart stopped beating and he passed away, the organ procurement would begin. However, he [End Page E1] would not be able to donate his heart. This was very sad for us, knowing how strong his little heart was, but we did understand the process.On January 28th 2010, our family spent the day saying goodbye to Ethan. Even though he could not respond, we know that he could hear us. The nurse was wonderful, doing everything possible to accommodate our large family and despite all the tubes and machines, make it so that I could cuddle with my little boy one last time.Ethan was moved to the operating room and with his stepfather and I on one side and his father and stepmother on the other, life support was removed. Watching my son take his last breath, while I held his hand, kissed his cheeks, told him I loved him and that it was okay to let go and go to Heaven was the hardest moment of... (shrink)

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)

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.