BackgroundBiobanks are considered to be key infrastructures for research development and have generated a lot of debate about their ethical, legal and social implications. While the focus has been on human genomic research, rapid advances in human microbiome research further complicate the debate.DiscussionWe draw on two cystic fibrosis biobanks in Toronto, Canada, to illustrate our points. The biobanks have been established to facilitate sample and data sharing for research into the link between disease progression and microbial dynamics in the lungs (...) of pediatric and adult patients. We begin by providing an overview of some of the ELSI associated with human microbiome research, particularly on the implications for the broader society. We then discuss ethical considerations regarding the identifiability of samples biobanked for human microbiome research, and examine the issue of return of results and incidental findings. We argue that, for the purposes of research ethics oversight, human microbiome research samples should be treated with the same privacy considerations as human tissues samples. We also suggest that returning individual microbiome-related findings could provide a powerful clinical tool for care management, but highlight the need for a more grounded understanding of contextual factors that may be unique to human microbiome research.ConclusionsWe revisit the ELSI of biobanking and consider the impact that human microbiome research might have. Our discussion focuses on identifiability of human microbiome research samples, and return of research results and incidental findings for clinical management. (shrink)

Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data (...) sensors Population biobanks, cohort studies, and genome databases Clinical and public health data Direct-to-consumer genetic testing Social media Fitness trackers, health apps, and biometric data sensors Ethical, legal, and social challenges of such collections are well recognized, but there has been limited attention to the broader societal implications of the existence of these collections. Although health research conducted using these collections is broadly recognized as beneficent, secondary uses of these data and samples may be controversial. We examine both documented and hypothetical scenarios of secondary uses of health data and samples. In particular, we focus on the use of health data for purposes of: Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Current safeguards relating to the use of health data and samples include research ethics oversight and privacy laws. These safeguards have a strong focus on informed consent and anonymization, which are aimed at the protection of the individual research subject. They are not intended to address broader societal implications of health data and sample collections. As such, existing arrangements are insufficient to protect against subversion of health databases for non-sanctioned secondary uses, or to provide guidance for reasonable but controversial secondary uses. We are concerned that existing debate in the scholarly literature and beyond has not sufficiently recognized the secondary data uses we outline in this paper. Our main purpose, therefore, is to raise awareness of the potential for unforeseen and unintended consequences, in particular negative consequences, of the increased availability and development of health data collections for research, by providing a comprehensive review of documented and hypothetical non-health research uses of such data. (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)

Generally, public opinion is measured via polls or survey instruments, with a majority of responses in a particular direction taken to indicate the presence of a given ‘public opinion’. However, discursive psychological and related scholarship has shown that the ontological status of both individual opinion and public opinion is highly suspect. In the first part of this article I draw on this body of work to demonstrate that there is currently no meaningful theoretical foundation for the construct of public opinion (...) as it is typically measured in surveys, polls, or focus groups. I then argue that there is a particular sense in which the construct of public opinion does make sense. In deliberative democratic forums participants engage in dialogue with the aim of coming to collective positions on particular issues. Here I draw on examples of deliberative democratic forums conducted on the social and ethical implications of science and technology. Conversation between participants in deliberative democratic forums is ideally characterized by individuals becoming informed about the issues being discussed, respectful interactions between participants, individuals being open to changing their positions, and a convergence towards collective positions in the interest of formulating civic solutions. The end-product of deliberation on a given issue might thus be termed a deliberative public opinion. ‘Deliberative public opinion’ is neither a cognitive nor an aggregate construct, but rather a socio-historical product. Criteria for its legitimacy rely on the inclusiveness of diversity of perspectives and the degree to which collective positions are defensible to a larger society. (shrink)

This book provides a significant contribution to scholarship on the psychology of science and the psychology of technology by showcasing a range of theory and research distinguished as psychological studies of science and technology. Science and technology are central to almost all domains of human activity, for which reason they are the focus of subdisciplines such as philosophy of science, philosophy of technology, sociology of knowledge, and history of science and technology. To date, psychology has been marginal in this space (...) and limited to relatively narrow epistemological orientations. By explicitly embracing pluralism and an international approach, this book offers new perspectives and directions for psychological contributions. The book brings together leading theorists and researchers from around the world and spans scholarship across a variety of traditions that include theoretical psychology, critical psychology, feminist psychology and social constructionist approaches. Following a historical and conceptual introduction, the collection is divided into three sections: Scoping a New Psychology of Science and Technology, Applying Psychological Concepts to the Study of Science and Technology and Critical Perspectives on Psychology as a Science. The book will interest interdisciplinary scholars who work in the space of Science and Technology Studies and psychologists interested in the diverse human aspects of science and technology. (shrink)

Biobanking of human tissues is associated with a range of ethical, legal, and social (ELS) challenges. These include difficulties in operationalising informed consent protocols, protecting donors’ privacy, managing the return of incidental findings, conceptualising ownership of tissues, and benefit sharing. Though largely unresolved, these challenges are well documented and debated in academic literature. One common response to the ELS challenges of biobanks is a call for strong and independent governance of biobanks. Theorists who argue along these lines suggest that since (...) fully informed consent to a single research project is often not feasible, research participants should be given the additional protection of being allowed to consent to the governance framework of the biobank. Such governance therefore needs to be transparent and ethically sustainable. In this paper we review the governance challenges of establishing and maintaining human tissue biobanks. We then discuss how the creation of a biobank for eggs and embryos, in particular, may introduce additional or unique challenges beyond those presented by the biobanking of other human tissues. Following previous work on biobank governance, we argue that ethically sustainable governance needs to be participatory, adaptive, and trustworthy. (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)

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

The practice of communicating research findings to participants has been identified as important in the research ethics literature, but little research has examined empirically how this occurs and...

Despite increasing scientific interest in self-generated thought-mental content largely independent of the immediate environment-there has yet to be any comprehensive synthesis of the subjective experience and neural correlates of affect in these forms of thinking. Here, we aim to develop an integrated affective neuroscience encompassing many forms of self-generated thought-normal and pathological, moderate and excessive, in waking and in sleep. In synthesizing existing literature on this topic, we reveal consistent findings pertaining to the prevalence, valence, and variability of emotion in (...) self-generated thought, and highlight how these factors might interact with self-generated thought to influence general well-being. We integrate these psychological findings with recent neuroimaging research, bringing attention to the neural correlates of affect in self-generated thought. We show that affect in self-generated thought is prevalent, positively biased, highly variable (both within and across individuals), and consistently recruits many brain areas implicated in emotional processing, including the orbitofrontal cortex, amygdala, insula, and medial prefrontal cortex. Many factors modulate these typical psychological and neural patterns, however; the emerging affective neuroscience of self-generated thought must endeavor to link brain function and subjective experience in both everyday self-generated thought as well as its dysfunctions in mental illness. (shrink)

The neural basis of human memory is incredibly complex. We argue that the diversity of neural systems underlying various forms of memory suggests that any discussion of enhancing ‘memory’ per se is too broad, thus obfuscating the biopolitical debate about human enhancement. Memory can be differentiated into at least four major systems with largely dissociable neural substrates. We outline each system, and discuss both the practical and the ethical implications of these diverse neural substrates. In practice, distinct neural bases imply (...) the possibility, and likely the necessity, of specific approaches for the safe and effective enhancement of various memory systems. In the debate over the ethical and social implications of enhancement technologies, this fine-grained perspective clarifies—and may partially mitigate—certain common concerns in enhancement debates, including issues related to safety, fairness, coercion, and authenticity. While many researchers certainly appreciate the neurobiological complexity of memory, the political debate tends to revolve around a monolithic one-size-fits-all conception. The overall project—exploring how human enhancement technologies affect society – stands to benefit from a deeper appreciation of memory’s neurobiological diversity. (shrink)

A central debate in philosophy and neuroscience pertains to whether PFC activity plays an essential role in the neural basis of consciousness. Neuroimaging and electrophysiology studies have revealed that the contents of conscious perceptual experience can be successfully decoded from PFC activity, but these findings might be confounded by post- perceptual cognitive processes, such as thinking, reasoning, and decision-making, that are not necessary for con- sciousness. To clarify the involvement of the PFC in consciousness, we present a synthesis of research (...) that has used intracranial electrical stimulation (iES) for the causal modulation of neural activity in the human PFC. This research provides compelling evidence that iES of only certain prefrontal regions (i.e., orbitofrontal cortex and anterior cingu- late cortex) reliably perturbs conscious experience. Conversely, stimulation of anterolateral prefrontal sites, often con- sidered crucial in higher-order and global workspace theories of consciousness, seldom elicits any reportable alterations in consciousness. Furthermore, the wide variety of iES-elicited effects in the PFC (e.g., emotions, thoughts, and olfactory and visual hallucinations) exhibits no clear relation to the immediate environment. Therefore, there is no evidence for the kinds of alterations in ongoing perceptual experience that would be predicted by higher-order or global workspace theories. Nevertheless, effects in the orbitofrontal and anterior cingulate cortices suggest a specific role for these PFC subregions in supporting emotional aspects of conscious experience. Overall, this evidence presents a challenge for higher-order and global workspace theories, which commonly point to the PFC as the basis for con- scious perception based on correlative and possibly confounded information. (shrink)

Classical science and in fact Post-Newtonian science up till the early twentieth century were mired in a deterministic interpretation of realities. The deterministic hypothesis in science holds that everything in nature has a cause and if one could know the antecedent causes, he could predict the future with certainty. But quantum mechanics holds that sub-atomic particles, though the ultimate materials from which all the complexity of existence in the universe emerges, do not obey deterministic laws, hence, their activities are causally (...) indeterminate and could only be understood with probability. This paper argues that quantum mechanics can not totally be free from determinism, for it has subtly conceded to determinism in holding that the sub-atomic particles are the building blocks of the macro world, and that there is interconnection between entities in the universe, even at the nonmanifest level. The probabilistic interpretation of quantum mechanics only betray our human limitation of the knowledge of nature, which, I believe still have lots of tricks in our sleeves over mankind. (shrink)

Certain proximities between two distinguished but very dissimilar contemporaries, Quintilian and Tacitus, may be stated. Contemporary they were, though the former, born probably a little before A.D. 40, was older by about twenty years. Both were from outside Rome, Quintilian certainly of provincial, Spanish, origin, Tacitus very probably from one of the Galliae, yet both exemplars of Romanitas.

In this collection of fourteen essays, first published in 1943, Herbert Read extends and amplifies the points of view expressed in his successful pamphlet _To Hell with Culture_, which has been reprinted here. The ‘politics of the unpolitical’ are the politics of those who strive for human values and not for national or sectional interests. Herbert Read defines these values and demands their recognition as a solvent of social and cultural crises’, and looks forward to the future with constructive vision. (...) This book will be of interest to students of politics, history, and philosophy. (shrink)