Robin Pierce

Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations

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 (IRBs) 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: (i) the ethical significance of compliance with website “terms of use”; (ii) the ethics of recruiting from the online networks of research participants; and (iii) 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.

Political and ethical aspects in the ethnography of policy translation: Research experiences from Turkey and China

A currently burgeoning literature in planning and policy studies engages with the travel of policy models across countries and sites through novel concepts such as policy translation, policy mobility, and mutations. Increasingly, this literature calls for ethnographic methods to study the travel of policy models. Such methods require various degrees of researcher’s participation in the policy process. As a result, ethnographers become entangled in complex webs of relationships during and after their fieldwork, which introduces political and ethical dimensions to ethnographic fieldwork. The literature on policy mobilities and translation, however, has provided few practical guidelines regarding the politics and ethics of conducting ethnographic research. Based on two vignettes from our research experiences in China and Turkey, we discuss the politics and ethics of applying ethnography to policy translation and offer a number of hints for future researchers.

Broader Challenges for DBS in the Treatment of Alzheimer's Disease

The number of indications for deep brain stimulation (DBS) is steadily increasing, with formal approvals for use in Parkinson’s disease (PD) and a select group of other indications. Promising symptomatic relief for intractable disorders, the interest in expanding the application of DBS understandably is generating hope where there has been little. Alzheimer’s disease (AD), a neurodegenerative disease, stands high on the list of currently most dreaded diseases and, moreover, one for which there is no effective treatment. This coupled with the alarming demographics of Alzheimer’s disease points to a need for new treatment approaches. In the United States, an estimated 5 million people currently suffer with dementia and this number is expected to triple by 2050. Worldwide, this number hovers at 18 million (National Institute on Aging [NIA] 2012– 2013). With no compelling evidence of an effective treatment on the horizon that would manage this disease, the interest in novel approaches is logical and perhaps even urgent. Thus, as Christen and colleagues (2014) report, 17% of medical centers surveyed plan to offer DBS to treat AD in the next 5 years. Yet in contrast to this experimental embrace of the promise of DBS for AD, only 3% of the experts surveyed were optimistic about the probability of success in treating AD with DBS (Christen et al. 2014). This contrast between the planned pursuit of novel indications and overwhelming skepticism about the likelihood of success merits further consideration, particularly in the context of the ethical focal points raised by Christen and colleagues. This essay points to two aspects of AD that require that the analysis of the ethical focal points be extended beyond those proposed by Christen and colleagues: (1) how do we derive appropriate expectations and (2) the importance of relational aspects of AD. Alzheimer’s disease is rapidly emerging as one of the great challenges of the 21st century, generating an increasing sense of urgency for identifying effective treatment. Despite a growing understanding of associated risk factors, AD progression, and related biomarkers, a cure remains elusive. Sometimes referred to as an impending epidemic, as an age-related disease, the incidence of AD is escalating in step with the worldwide demographic shift toward older populations. It is against this backdrop of rising incidence and projections of far horizons for success (Bor 2014) that any examination of ethical focal points for the use of DBS to treat AD must take place. Certainly, many issues inherent to the use of DBS transcend disease and disorder applications, for example, capacity to consent, authenticity, and cost-effectiveness. But even a cursory consideration of differences in the nature of the underlying impairment makes it abundantly clear that specific indications require dedicated consideration; for example, capacity to consent to DBS by a person with dementia raises different questions from capacity to consent by a person suffering from obesity, although an aspect of the cost-effectiveness may be similar given increasing characterization as an epidemic. Christen and colleagues add much to the discussion in their call for quality standards, registries, and capacity planning in the institutional dimension and review of entry points, multidisciplinary teams, and so on in the patient dimension. But these considerations put forth by Christen and colleagues, while meritorious, would permit dismissal of some of the most central concerns regarding appropriate treatment of AD patients. First, the issue of appropriate expectations must be raised. Christen and colleagues report that only 3% of experts surveyed think that treatment of AD with DBS is likely to be successful, leaving 97% who do not expect success. Yet 17% of centers plan to offer DBS to AD patients. If a community has low expectations for the success for a particular intervention, it is impossible to know what this actually means without more information. What explains this low expectation of success among those arguably in the best position to understand the potential of the technology? Without further data explaining survey responses, it is impossible to know precisely what the basis is for these dismal expectations. There are critical features about AD that should inform expectations about the likelihood of success of DBS as treatment of AD. First, there is considerable discussion in

Away from fossil-fuels and toward a bioeconomy : Knowledge versatility for public policy

In the face of energy security and climate change, and with technological advances, many industrial countries have embraced the transition to a bioeconomy – an economy based on energy, chemicals and materials obtained from biomass. However, the policy and academic discourses on a bioeconomy transition suggest growing controversy around its social, environmental and ethical impacts. In this article, we apply an epistemic forms framework to better understand the scope and extent of the bioeconomy debate. We find that industry and governments take a narrow approach to a bioeconomy and tend to view it exclusively as a technical concept. We argue that the discursive and practical dimensions of the transition would shed light on the issues of what type of a bioeconomy to strive for, through which procedures and with what impacts for diverse stakeholders. We conclude with a set of recommendations related to a bioeconomy transition.

Global governance of biofuels: a case for public-private governance?

With this paper, we examine the current state of global governance of biofuels and assess the potential regulatory and non-regulatory mechanisms for such governance. We ask two questions: a) what are the current efforts and initiatives towards the global governance of biofuels; and b) which form of global governance is more likely to emerge in the field of bioenergy. We come to the conclusion that institution building through private governance and non-state actor partnerships can offer a viable and effective means of governance. However, the primacy of partnerships and networks in global governance also means a number of pitfalls to avoid, especially with regard to legitimacy and inclusion. Drawing lessons from the fields of forest and marine policy, we close with a number of policy recommendations for better private initiatives and partnerships for global governance of biofuels.

Using Dialogues to Explore Genetics, Ancestry, and Race

Abstract Teaching the topic of genetics in relationship to ancestry and race generates many questions, and requires a teaching strategy that encourages perspective-based exploration and discussion. We have developed a set of dialogues for discussing the complex science of genetics, ancestry, and race that is contextualized in real human interactions and that contends with the social and ethical implications of this science. This article provides some brief historical and scientific context for these dialogues, describes their development, and relates how we have used them in different ways to engage diverse groups of science learners. The dialogue series can be incorporated into classroom or informal science education settings. After listening to or performing the dialogues and participating in a discussion, students will: (1) recognize misunderstandings about the relationship between DNA and race; (2) describe how DNA testing services assign geographic ancestry; (3) explain how scientific findings have been used historically to promote institutionalized racism and the role personal biases can play in science; (4) identify situations in their own life that have affected their understanding of genetics and race; and (5) discuss the potential consequences of the racialization of medicine as well as other fallacies about the connection of science and race.