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)

Revision of author's thesis (Ph. D.)--University of Oxford, 2012 under title Moral theological method in the theological ethics of Martin Luther and Arthur Rich, with particular reference to their economic ethics.

Attitudes toward repository projects cannot be explained merely on the basis of perceived risks, trust, or technical information. Issues of justice and fairness frequently arise when burdens and benefits are to be allocated. A fair distribution across the various parts of a given territory of the waste to be stored is unlikely to be accomplished as it is contingent on appropriate geological formations and other factors. The process by which the specific distribution is determined and accomplished needs to be taken (...) into account as well. Thus, justice evaluations of both the distributive outcome and the process itself, by which the outcome is accomplished, are likely to affect people’s attitudes toward and acceptance of siting decisions. Data from a number of methodically different studies conducted over the last eight years on site selection in Switzerland suggest that a fair procedure is more essential than a fair distribution to a consensus about the decisions made. As a consequence, even normative assessments of the fairness of a distribution of nuclear waste must consider procedural justice as a valuable indicator, independently of the particular shape of the distribution. However, contextual factors, such as the wider nuclear energy strategy of a country, may compete with procedural fairness in terms of importance. Even though fairness is a requirement it does not guarantee acceptance. It may, however, enhance acceptability from a moral standpoint. (shrink)

This paper explores how fair trade social enterprises manage paradoxes in stakeholder-oriented governance models. We use narrative accounts from board members, at governance events and board documents to report an exploratory study of paradoxes in three FTSEs which are partly farmer-owned. Having synthesized the key social enterprise governance literature and framed it alongside the broader paradox theory, we used narratives to explore how tensions are articulated, how they can be applied within an adapted paradox framework, and how governance actors seek (...) to mitigate paradoxes. The paper contributes to current debates in social enterprise scholarship concerning hybridity :455–476, 2010; in Institutional logics in action, Part B, 2012), hybrid organizing :397–441, 2014) and operational tensions :407–442, 2013) by illustrating empirically how the central social/enterprise paradox manifests in FTSEs governance arrangements. We build on the paradox categories proposed by Lüscher and Lewis :221–240, 2008) and adapted in Smith et al. :407–442, 2013) by developing a recursive model of legitimacy-seeking governance processes, conceptualizing how boards seek to mitigate, but not necessarily resolve, paradoxes. (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)

BackgroundElectronic patient record (EPR) technology is a key enabler for improvements to healthcare service and management. To ensure these improvements and the means to achieve them are socially and ethically desirable, careful consideration of the ethical implications of EPRs is indicated. The purpose of this scoping review was to map the literature related to the ethics of EPR technology. The literature review was conducted to catalogue the prevalent ethical terms, to describe the associated ethical challenges and opportunities, and to identify (...) the actors involved. By doing so, it aimed to support the future development of ethics guidance in the EPR domain.MethodsTo identify journal articles debating the ethics of EPRs, Scopus, Web of Science, and PubMed academic databases were queried and yielded 123 eligible articles. The following inclusion criteria were applied: articles need to be in the English language; present normative arguments and not solely empirical research; include an abstract for software analysis; and discuss EPR technology.ResultsThe medical specialty, type of information captured and stored in EPRs, their use and functionality varied widely across the included articles. Ethical terms extracted were categorised into clusters ‘privacy’, ‘autonomy’, ‘risk/benefit’, ‘human relationships’, and ‘responsibility’. The literature shows that EPR-related ethical concerns can have both positive and negative implications, and that a wide variety of actors with rights and/or responsibilities regarding the safe and ethical adoption of the technology are involved.ConclusionsWhile there is considerable consensus in the literature regarding EPR-related ethical principles, some of the associated challenges and opportunities remain underdiscussed. For example, much of the debate is presented in a manner more in keeping with a traditional model of healthcare and fails to take account of the multidimensional ensemble of factors at play in the EPR era and the consequent need to redefine/modify ethical norms to align with a digitally-enabled health service. Similarly, the academic discussion focuses predominantly on bioethical values. However, approaches from digital ethics may also be helpful to identify and deliberate about current and emerging EPR-related ethical concerns. (shrink)

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

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)

The current global ecological crises have, inter alia, led to an upsurge in massive migrations, food crises, diseases, pandemics, increased conflict and war especially in African societies. Most of those affected are the small farmers in rural communities who depend on agriculture. This crisis has not only raised concerns about the extent of the damage humans and human activities are causing to the natural environment but has also ignited discussions about the urgent necessity for a change in human behavior and (...) our obligations towards a new agrarian philosophy. In this chapter, I argue that Henry Odera Oruka’s Parental Earth Ethics could be adopted as a new principle of global justice and for grounding global environmental ethics. This principle invites us towards rethinking ecological fairness and global justice. Specifically, I opine that Oruka’s Parental Earth Ethics could be a veritable resource in our search for: (i) promoting global justice in the use and equal distribution of wealth and world resources for the common good and security of all, and (ii) global environmental ethics. It is basically driven by the ethical principle of the human minimum, which ought to inspire us humans to be more ethically and politically responsible in their use and distribution of world resources for the good and security of all. (shrink)

Why does female under- representation emerge during undergraduate education? At the University of Sydney, we surveyed students before and after their first philosophy course. We failed to find any evidence that this course disproportionately discouraged female students from continuing in philosophy relative to male students. Instead, we found evidence of an interaction effect between gender and existing attitudes about philosophy coming into tertiary education that appears at least partially responsible for this poor retention. At the first lecture, disproportionately few female (...) students intended to major. Further, at the first lecture, female students were less interested in philosophy, were less self-confident about philosophy, and were less able to imagine themselves as philosophers. Similarly, female students predicted they would feel more uncomfortable in philosophy classes than male students did. Further study with a control is warranted to determine whether this interaction effect is peculiar to philosophy, or whether it is indicative of a more general gendered trend amongst first year undergraduate students. (shrink)