The use of social media as a recruitment tool for research with humans is increasing, and likely to continue to grow. Despite this, to date there has been no specific regulatory guidance and there has been little in the bioethics literature to guide investigators and institutional review boards faced with navigating the ethical issues such use raises. We begin to fill this gap by first defending a nonexceptionalist methodology for assessing social media recruitment; second, examining respect for privacy and investigator (...) transparency as key norms governing social media recruitment; and, finally, analyzing three relatively novel aspects of social media recruitment: the ethical significance of compliance with website “terms of use”; the ethics of recruiting from the online networks of research participants; and the ethical implications of online communication from and between participants. Two checklists aimed at guiding investigators and IRBs through the ethical issues are included as appendices. (shrink)
The recent proposal by Douglas and Savulescu for an ethics of knowledge provokes a renewed consideration of an enduring issue. Yet, the concept raises significant challenges for procedural and substantive justice. Indeed, the operationalisation of ‘an ethics of knowledge’ could be as alarming as what it seeks to prevent. While we can acknowledge that there is, and surely always will be, potential for misuse of beneficial science and technology, a contemplated conception of what we ought to not know, devise or (...) disseminate sets before us an enormously complex task. This essay challenges an ethics of knowledge to respond to concerns of procedural and substantive justice. While the concept has a certain appeal, it does not appear to adequately address certain fundamental issues as it is currently presented. Here, the author invites consideration of two primary points: (1) who should decide, based on whose interests? and (2) could such an exercise actually be effective in achieving its goal? (shrink)
Many are calling for concrete mechanisms of oversight for health research involving artificial intelligence (AI). In response, institutional review boards (IRBs) are being turned to as a familiar model of governance. Here, we examine the IRB model as a form of ethics oversight for health research that uses AI. We consider the model's origins, analyze the challenges IRBs are facing in the contexts of both industry and academia, and offer concrete recommendations for how these committees might be adapted in order (...) to provide an effective mechanism of oversight for health‐related AI research. (shrink)
What value does genomics hold for industry? Ten years after the White House Press conference where the human genome sequence was first presented, we ask in which ways and to what extent the developments in genomics have been integrated into industry. This enables us to assess whether this integration has been as successful as expected, but also which unexpected developments in genomics advances have triggered additional benefits for industry. Genomics has contributed to the beginning of a global transition to a (...) bio-based economy, but there have been and there still are hurdles to be cleared. The hurdles are not merely of a technological nature, since the objectives are a complex between economic progress, environmental and global climate concerns, and energy security. Therefore, they are at the same time technological, societal and environmental in nature. These categorisations fall short of articulating the many issues that arise, such as economic development , public opinion formation and scientific and technological progress. We argue that to make this transition happen, industrialists, policy makers and the wider public have to be prepared to be more actively involved in the debate, weighing the pros and cons and taking responsibility in creating the desired sustainable world. This paper will examine the advances of genomics in the industrial context, the role of these advances in current attempts to find sustainable solutions to a variety of problems, the enthusiasm with which they have been picked up, the implications for industrial innovation and the accompanying discussion about possible consequential social and ethical issues. It will also sketch out the nature of this ongoing establishment of a bio-based economy, the parties that are currently at the negotiation table, and whether the current situation has an impact on the way societal debates emerge. (shrink)
Mental health courts, premised on the notion of therapeutic justice, have become an increasingly appealing way of dealing with what is widely, although not uniformly, seen as the inappropriate incarceration of people who engage in criminal behavior caused by mental illness. Nevertheless, mental health courts are not without their critics and a number of objections have been raised against the implementation of these courts. Among these criticisms is that mental health courts may inappropriately privilege criminal behavior by the provision of (...) expedited comprehensive services to persons with mental illness who commit criminal of enses and, in doing so, reduce or delay the provision of services to persons with mental illness who do not engage in criminal behavior. This article explores the mechanisms that may result in “queue-jumping” and analyzes whether a priority to of enders, when it does occur, is justii able. (shrink)
