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)

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

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)

This article identifies and examines a tension in mental health researchers’ growing enthusiasm for the use of computational tools powered by advances in artificial intelligence and machine learning (AI/ML). Although there is increasing recognition of the value of participatory methods in science generally and in mental health research specifically, many AI/ML approaches, fueled by an ever-growing number of sensors collecting multimodal data, risk further distancing participants from research processes and rendering them as mere vectors or collections of data points. The (...) imperatives of the “participatory turn” in mental health research may be at odds with the (often unquestioned) assumptions and data collection methods of AI/ML approaches. This article aims to show why this is a problem and how it might be addressed. (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)

Reviews the book, Relational being: Beyond self and community by Kenneth J. Gergen . In this book, Gergen develops and elaborates a theoretical framework for shifting the unit of analysis in psychology and other social sciences away from the individual toward relationships. The core arguments of the book revolve around claims that individuals are social constructs that should be understood not as natural and self-evident phenomena but rather as emergent from relationships. By corollary, many of the properties traditionally associated with (...) individuals are argued to be better understood as relational accomplishments; that is, as arising from the larger context of the social fabric from which individuals are seen to be emergent. Significantly, Gergen also asserts that traditional individualist assumptions have negative impacts on our social world. He focuses on a number of specific domains to illustrate how a relational approach would lead to a more constructive, harmonious, and better existence. I found much value in the practical aspects of Gergen’s exposition of relational being, while feeling uncomfortable with the epistemological and ontological foundations provided in the book. The root of this ambiguity seems to lie in Gergen’s own contradictory stance, which oscillates between offering a relational approach as “just another perspective” and implying the moral and epistemic superiority of relational over individualist approaches. Although the former position seems to me sensible and appropriate, the latter constitutes an unnecessary universalism that seems to run counter to the pluralistic spirit that is evident in parts of the book. Gergen’s own words, "Let us replace the Hobbesian dystopia of 'all against all,' with a vision of 'all with all'" for me sums up both the strengths and weaknesses of the book—the insights offered by the application of a relational perspective to specific practical contexts are a truly valuable contribution; but suggesting that this perspective is a panacea and needs to replace all individualistic accounts is counterproductive. 2012 APA, all rights reserved). (shrink)

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...

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)

Cover -- Title -- Copyright -- Contents -- List of table -- Notes on contributors -- Acknowledgements -- Introduction: environmental human rights and political theory -- 1 The rights of humans as ecologically embedded beings -- 2 Defining the natural in the Anthropocene: what does the right to a 'natural' environment mean now? -- 3 Reconciliation of nature and society: how far can rights take us? -- 4 The foundation of rights to nature -- 5 Rights to natural resources and (...) human rights -- 6 Making sense of the human right to landscape -- 7 What's so good about environmental human rights? Constitutional versus international environmental rights -- 8 Environmental human rights - concepts of responsibility -- 9 Future people's rights: dispelling an ontological worry -- 10 Human rights-based precautionary approaches and risk imposition in the context of climate change -- Index. (shrink)

Quite honestly, it is not easy to see what all the fuss is about. Sir Julian Huxley was clearly impressed. “A landmark in modern thought which we cannot afford to pass by” wrote John Stewart Collis in the Sunday Times, and the following week Arnold Toynbee in the Observer wrote: “This is a great book. If it is eclipsed by anything, it is by the spirit of the author, which shines through it”. The French reaction to the original text was (...) at least equally enthusiastic. André Rousseaux in Figaro Littéraire says: “Not since the 12th. Century has there been such a satisfying exposition of the perfect understanding between the material world and that of Christ Incarnate”. One wonders how much of the enthusiasm is due to the fact that Father Teilhard was not allowed to publish his philosophical thought in his own lifetime. The facts of his life are well known. Born in 1881, he joined the Jesuits in 1899 and was ordained. in 1912. Prehistory, geology, palaeontology, anthropology, were his chief intellectual interests, and he took his doctorate in the Sorbonne in 1922. He became professor of geology in the Institut Catholique in Paris and in 1923 went with Pére Licent S.J. to China on a palaeontological mission. The detail is given by Sir Julian in the introduction, in the course of which he pays Père Teilhard many felicitous tributes, notably that he was “a dedicated Christian priest.” On his return to France, Sir Julian tells us, “some of the ideas which he had expressed in his lectures about original sin and its relation to evolution, were regarded as unorthodox by his religious superiors, and he was forbidden to continue teaching.” He spent the next twenty years mostly in China with occasional scientific visits to India, Burma, Java, Abyssinia and the United States. The work under review was all but finished in Peking in 1938-1940. (shrink)

In this model consciousness is a form of memory. We are essentially “living in the past” as our experience, the qualia, is always of past events. Consciousness represents the storage of past events for use in future situations and it is altered by external experience of the organism. Psychological frameworks of conditioning and learning theory are used to explain this model along with recent neuropsychological research on synaesthesia and phantom limb pain. Consciousness results from the gradual evolutionary development of the (...) human information processing function. Language is hypothesised to have evolved at a pre-conscious stage of human development as a function of the need for ‘within-organism’ data storage. Communication with others may not have been the initial evolutionary advantage conferred by language. The later incidental use of language as a communication tool, which results in the reflecting back of one’s experience through others, is what has triggered a conscious experience. (shrink)

This is an important work. It is sub-titled “Reality orion?” and makes a valiant effort to reinstate the notion of person as the keyconcept in psychology. There is a preface by Professor Oeser, of the University of Melbourne, which gives a good indication of what the book is about, and incidentally does great credit to the faculty of psychology in Melbourne. “When” says Professor Oeser, “about the middle of the nineteenth century, the science of experimental psychology was born, the infant (...) was crippled by an array of physical and physiological instruments. It was starved on a diet of psychophysics, and later of rats….” Instead of a preoccupation with psychophysics and rats, Oeser contends that the science should concern itself with “the person”, and lauds Lafitte for the devastating way in which he has dealt with “the perversions or pseudo-sciences of some psychometricians, psycho-analysts and rat-lovers”. This is trenchant writing, and Lafitte in the substance of the work lives up to the promise of the foreword, both in ideas and in style. (shrink)

This little essay of Bergson’s was originally delivered as a lecture to the Institut Psychologique in 1901, and published the same year in the Revue Scientifique. The date is significant: it was the year after Freud’s great work, The Interpretation of Dreams, was published. Bergson’s lecture came therefore at the end of the era of the old introspective psychologists, and before the new depth theories had become the commonplace they now are. So Bergson can state: “There is nothing mysterious about (...) the birth of a dream”. Dreams are due to the fact that our senses continue to function in sleep, responding to external stimuli though less accurately than when we are awake, and at the same time responding to what we would now perhaps call the internal spontaneous discharges of the end–receptors themselves. (shrink)