Kieran O'Doherty

From consent to institutions: Designing adaptive governance for genomic biobanks

Biobanks are increasingly hailed as powerful tools to advance health research. The social and ethical challenges associated with the implementation and operation of biobanks are equally well-documented. One of the proposed solutions to these challenges involves trading off a reduction in the specificity of informed consent protocols with an increased emphasis on governance. However, little work has gone into formulating what such governance might look like. In this paper, we suggest four general principles that should inform biobank governance and illustrate the enactment of these principles in a proposed governance model for a particular population-scale biobank, the British Columbia (BC) Generations Project. We begin by outlining four principles that we see as necessary for informing sustainable and effective governance of biobanks: (1) recognition of research participants and publics as a collective body, (2) trustworthiness, (3) adaptive management, and (4) fit between the nature of a particular biobank and the specific structural elements of governance adopted. Using the BC Generations Project as a case study, we then offer as a working model for further discussion the outlines of a proposed governance structure enacting these principles. Ultimately, our goal is to design an adaptive governance approach that can protect participant interests as well as promote effective translational health sciences.

“Asylum seekers”, “boat people” and “illegal immigrants”: Social categorisation in the media

This paper is concerned with representations of people entering Australia to request asylum. The study critically analyses the role of social categorisation in descriptions about these people, drawn from texts available through the Australian print media. The aim is to examine constructions that constitute marginalising practices toward people who request asylum in Australia. It is argued that traditional approaches to social categorisation have a number of shortcomings, particularly in the context of an examination of potentially marginalising discourse. A discursive psychological approach is adopted for the purpose of analysing certain categorisations and identifying the social actions they constitute. Sample extracts are drawn from media articles and specific categories examined include “illegal immigrants”, “boat people”, and related category labels. It is argued that certain types of categorisation can support and encourage specific actions and, in particular, specific marginalising practices.

Who owns your poop?: insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies.

BackgroundWhile the social, ethical, and legal implications of biobanking and large scale data sharing are already complicated enough, they may be further compounded by research on the human microbiome.DiscussionThe human microbiome is the entire complement of microorganisms that exists in and on every human body. Currently most biobanks focus primarily on human tissues and/or associated data (e.g. health records). Accordingly, most discussions in the social sciences and humanities on these issues are focused (appropriately so) on the implications of biobanks and sharing data derived from human tissues. However, rapid advances in human microbiome research involve collecting large amounts of data on microorganisms that exist in symbiotic relationships with the human body. Currently it is not clear whether these microorganisms should be considered part of or separate from the human body. Arguments can be made for both, but ultimately it seems that the dichotomy of human versus non-human and self versus non-self inevitably breaks down in this context. This situation has the potential to add further complications to debates on biobanking.SummaryIn this paper, we revisit some of the core problem areas of privacy, consent, ownership, return of results, governance, and benefit sharing, and consider how they might be impacted upon by human microbiome research. Some of the issues discussed also have relevance to other forms of microbial research. Discussion of these themes is guided by conceptual analysis of microbiome research and interviews with leading Canadian scientists in the field.

Risky communication: pitfalls in counseling about risk, and how to avoid them

A genetic counselor is often faced with the difficult task of conveying a set of complex and highly abstract factors associated with the clients risk of developing a familial disorder. The client is faced with the even more difficult task of making significant health-related decisions about an event which may or may not eventuate. Although there is a large corpus of research on this topic, much of the knowledge on risk communication is difficult to apply in a practical context. In this paper we draw together some insights on risk communication and decision-making under conditions of uncertainty, and apply them directly to the problem of communicating familial cancer risk. In particular, we focus on the distinction between individual risk and observed frequencies of adverse events, various framing effects, and contextualizing risk communication. We draw attention to some of the potential pitfalls in counseling about risk and offer avenues for circumventing them.

A review of the key issues associated with the commercialization of biobanks

A review of the key issues associated with the commercialization of biobanks Timothy Caulfield∗, Sarah Burningham, Yann Joly, ZubinMaster, Mahsa Shabani, Pascal Borry, Allan Becker, Michael Burgess, Kathryn Calder, Christine Critchley, Kelly Edwards, Stephanie M. Fullerton, Herbert Gottweis, Robyn Hyde-Lay, Judy Illes, Rosario Isasi, Kazuto Kato, Jane Kaye, Bartha Knoppers, John Lynch, AmyMcGuire, Eric Meslin, Dianne Nicol, Kieran O’Doherty, Ubaka Ogbogu, Margaret Otlowski, Daryl Pullman, Nola Ries, Chris Scott, Malcolm Sears, HelenWallace andMa’n H. Zawati†

The characteristics of mobile data service users in Australia

Mobile Data Services (MDS) are increasingly important as revenues from voice calling are decreasing for mobile carriers, and there are many predictions that the use of MDS will increase in Australia. To explore the characteristics of MDS users, we conducted a survey with over 6000 respondents in Australia. The findings show that age is the most important demographic variable which influences the pattern of MDS use. In addition, gender and household income have a role in describing each groups consumption of MDS more precisely. We conclude the paper by presenting limitations of the study and outlining some possible future research.

Biobank governance: a lesson in trust

Biobanks are controversial due to their ethical, legal, and social implications. Recent discussion has highlighted a central role for governance in helping to address these controversies. We argue that sustainable governance of biobanks needs to be informed by public discourse. We present an analysis of a deliberative public engagement to explore the public values, concerns, and interests underlying recommendations pertaining to biobank governance. In particular, we identify five themes underlying expressed goals and concerns of participants regarding the development, operation and application of biobank research. Ultimately, we argue that, for the deliberants, governance represented a way to achieve trust in biobanks through accountability, transparency and control. As discussion of biobank governance moves the conceptual to the specific, policy makers and researchers should acknowledge the importance of the public viewpoint in maintaining trust; this acknowledgement is of importance to the ultimate success and longevity of biobanks.

Perspectives on Engaging the Public in the Ethics of Emerging Biotechnologies: From Salmon to Biobanks to Neuroethics

In anticipation of increasing interest in public engagement, this article seeks to expand the current discussion in the neuroethics literature concerning what public engagement on issues related to neuroscience might entail and how they could be envisioned. It notes that the small amount of available neuroethics literature related to public engagement has principally discussed only communication/education or made calls for dialogue without exploring what this might entail on a practical level. The article links across three seemingly disparate examples—salmon, biobanks, and neuroethics—to consider and clarify the need for public engagement in neuroscience.

Risk Communication in Genetic Counselling A Discursive Approach to Probability

This paper argues for and demonstrates a language-based treatment of probability. The study was motivated by an observation that there is ambiguity in the use of probabilistic terminology in risk communication in genetic counselling. In particular, it was found that terms such as ‘risk’ and ‘probability’ were founded upon different ontological constructs. Most philosophical approaches to probability do not adequately explain this phenomenon. In spite of much variation in theoretical views on probability, one common element is that probability is viewed as an ‘object’ about which knowledge can be obtained. In contrast, a discursive approach to probability offers a way to understand risk communication (and probabilistic discourse more generally) that involves a focus on the function of probability statements in language. In this paper Toulmins view of probability is used as a foundation for a discursive analysis of probability. Such an analysis is illustrated in transcripts from genetic counselling sessions.

Young Australians' perceptions of mobile phone content and information services:an analysis of the motivations behind usage

Purpose – This paper aims to understand the motivational factors that influence the purchase of mobile phone content among young Australians.Design/methodology/approach – An interpretive qualitative analysis of focus group data is used to explore the topic. Focus group participants were strategically selected from a larger sample to be representative on a broad range of demographic variables.Findings – There is considerable negativity associated with spending money on mobile content owing to the following factors: The mobile phone is perceived primarily as a communication tool. Money spent on the mobile phone for uses not related to communication is often perceived as wasted. The mobile phone is seen as an inferior channel for entertainment and information when compared to television, magazines, and the internet. Consumers are wary of deceptive advertising practices for mobile content. Many consumers are able to access “free” content.Research limitations/implications – Future research should focus on comp...