The application of neurostimulation techniques such as deep brain stimulation (DBS)-often called a brain pacemaker for neurological conditions like Parkinson's disease (PD)-has generated "currents of hope." Building on this hope, there is significant interest in applying neurostimulation to psychiatric disorders such as major depression and obsessive-compulsive disorder (OCD). 1 These emerging neurosurgical practices raise a number of important ethical and social questions in matters of resource allocation, informed consent for vulnerable populations, and commercialization of research. The media are, in many respects, at the crossroads of numerous social forces that inform public discourse on science and medical practices. Hence, an examination of the media offers a window into some of the forces that shape public understanding of science and research. This paper reports results of a comparative study of neurostimulation techniques in print media from the United States and the United Kingdom, with a focus on the public understanding of neurostimulation and the coverage of ethical, legal, and social issues.
The current and potential uses of neuroimaging in healthcare and beyond have spurred discussion about the ethical issues related to neuroimaging and neuroimaging research. This study examined the perspectives of neuroimagers on ethical issues in their research and on the ethics review process. One hundred neuroimagers from 13 Canadian neuroscience centers completed an online survey and 35 semi-structured interviews were conducted. Neuroimagers felt that most ethical and social issues identified in the literature were dealt with adequately, well, and even very well by research ethics boards (REBs), but some issues such as incidental findings and transfer of knowledge were problematic. Neuroimagers reported a range of practical problems in the ethics review process. We aimed to gather perspectives from REB on the ethics review process, but insufficient participation by REBs prevented us from reporting their perspectives. Given shortcomings identified by neuroimagers as well as longstanding issues in Canadian ethics governance, we believe that substantial challenges exist in Canadian research ethics governance that jeopardize trust, communication, and the overall soundness of research ethics governance. Neuroimagers and REBs should consider their shared responsibilities in developing guidance to handle issues such as incidental findings, risk assessment, and knowledge transfer.
Background:“Therapeutic misconception” arises when human subjects interpret a clinical trial as aimed primarily at therapy rather than producing knowledge. Therapeutic misconceptions may be more prevalent in trials enrolling gravely ill subjects or involving novel and well publicised investigational agents.Objective:To examine the extent to which investigators express therapeutic optimism in phase 1 human gene transfer consent documents, whether highly active gene transfer researchers are more prone to expressing therapeutic optimism, and whether consent forms have grown more optimistic in their descriptions of personal benefit over the last decade.Design:Content analysis was performed on 277 consent documents to measure the number of sentences describing possibility of benefit, terminology used for experimental agents, the proportion of statements describing personal versus societal benefits, and whether investigators attempted to thwart therapeutic misconceptions.Results:Consent forms generally used therapeutic terminology to describe study agents, devoted more sentences to describing possible personal benefits than to describing benefits to society, and infrequently explained that a particular benefit was unlikely. Consent documents used by highly active gene transfer researchers tended to portray significantly greater optimism about personal benefit than less active investigators, though they were also significantly more cautious with agent terminology. Finally, therapeutic optimism expressed in consent forms has declined over the past decade.Conclusions:Consent documents used in phase 1 gene transfer trials, although increasingly attentive to possible therapeutic misconceptions, are inappropriately optimistic about direct benefits of trial participation. Such optimism is expressed more emphatically in trials involving highly active gene transfer researchers as principal investigators.
BackgroundPhysicians treating patients in the vegetative state (VS) must deal with uncertainty in diagnosis and prognosis, as well as ethical issues. We examined whether physicians’ attitudes toward medical and ethical challenges vary across two national medical practice settings.MethodsA comparative survey was conducted among German and Canadian specialty physicians, based on a case vignette about the VS. Similarities and differences of participants’ attitudes toward medical and ethical challenges between the two samples were analyzed with non-parametric tests (Mann-Whitney-U-Test).ResultsThe overall response rate was 13.4%. Eighty percent of all participants correctly applied the diagnostic category of VS with no significant differences between countries. Many of the participants who chose the correct diagnosis of VS attributed capabilities to the patient, particularly the ability to feel pain (70%), touch (51%) and to experience hunger and thirst (35%). A large majority of participants (94%) considered the limitation of life-sustaining treatment (LST) under certain circumstances, but more Canadian participants were in favor of always limiting LST (32% vs. 12%; Chi-square: p < 0.001). Finding long-term care placement was considered more challenging by Canadian participants whereas discontinuing LST was much more challenging for German participants.ConclusionsDifferences were found between two national medical practice settings with respect to physicians’ experiences and attitudes about treatment limitation about VS in spite of comparable diagnostic knowledge.
This study aims to understand the influence of the ethical and legal issues on cloud computing adoption in the field of genomics research. To do so, we adapted Diffusion of Innovation (DoI) theory to enable understanding of how key stakeholders manage the various ethical and legal issues they encounter when adopting cloud computing. Twenty semi-structured interviews were conducted with genomics researchers, patient advocates and cloud service providers. Thematic analysis generated five major themes: 1) Getting comfortable with cloud computing; 2) Weighing the advantages and the risks of cloud computing; 3) Reconciling cloud computing with data privacy; 4) Maintaining trust and 5) Anticipating the cloud by creating the conditions for cloud adoption. Our analysis highlights the tendency among genomics researchers to gradually adopt cloud technology. Efforts made by cloud service providers to promote cloud computing adoption are confronted by researchers’ perpetual cost and security concerns, along with a lack of familiarity with the technology. Further underlying those fears are researchers’ legal responsibility with respect to the data that is stored on the cloud. Alternative consent mechanisms aimed at increasing patients’ control over the use of their data also provide a means to circumvent various institutional and jurisdictional hurdles that restrict access by creating siloed databases. However, the risk of creating new, cloud-based silos may run counter to the goal in genomics research to increase data sharing on a global scale.
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