Abstract:Brain–computer interfaces (BCIs) can enable communication for persons in severe paralysis including locked-in syndrome (LIS); that is, being unable to move or speak while aware. In cases of complete loss of muscle control, termed “complete locked-in syndrome,” a BCI may be the only viable solution to restore communication. However, a widespread ignorance regarding quality of life in LIS, current BCIs, and their potential as an assistive technology for persons in LIS, needlessly causes a harmful situation for this cohort. In addition (...) to their medical condition, these persons also face social barriers often perceived as more impairing than their physical condition. Through social exclusion, stigmatization, and frequently being underestimated in their abilities, these persons are being locked out in addition to being locked-in. In this article, we (1) show how persons in LIS are being locked out, including how key issues addressed in the existing literature on ethics, LIS, and BCIs for communication, such as autonomy, quality of life, and advance directives, may reinforce these confinements; (2) show how these practices violate the United Nations Convention on the Rights of Persons with Disabilities, and suggest that we have a moral responsibility to prevent and stop this exclusion; and (3) discuss the role of BCIs for communication as one means to this end and suggest that a novel approach to BCI research is necessary to acknowledge the moral responsibility toward the end users and avoid violating the human rights of persons in LIS. (shrink)

The introduction of new medical treatments based on invasive technologies has often been surrounded by both hopes and fears. Hope, since a new intervention can create new opportunities either in terms of providing a cure for the disease or impairment at hand; or as alleviation of symptoms. Fear, since an invasive treatment involving implanting a medical device can result in unknown complications such as hardware failure and undesirable medical consequences. However, hopes and fears may also arise due to the cultural (...) embeddedness of technology, where a therapy due to ethical, social, political and religious concerns could be perceived as either a blessing or a threat. While Deep Brain Stimulation (DBS) for treatment resistant depression (TRD) is still in its cradle, it is important to be proactive and try to scrutinize both surfacing hopes and fears. Patients will not benefit if a promising treatment is banned or avoided due to unfounded fears, nor will they benefit if DBS is used without scrutinizing the arguments which call for caution. Hence blind optimism is equally troublesome. We suggest that specificity, both in terms of a detailed account of relevant scientific concerns as well as ethical considerations, could be a way to analyse expressed concerns regarding DBS for TRD. This approach is particularly fruitful when applied to hopes and fears evoked by DBS for TRD, since it can reveal if our comprehension of DBS for TRD suffer from various biases which may remain unnoticed at first glance. We suggest that such biases exist, albeit a further analysis is needed to explore this issue in full. (shrink)

Purpose The purpose of this paper is to describe and explore the current state of internet regulation through content filters in Swedish public libraries. Design/methodology/approach Data was collected through an electronic survey directed to library managers of Sweden’s 290 main municipal libraries. 164 answers were returned, yielding a 57% response rate. The analysis comprises descriptive statistics for quantitative data and an activity theory approach with focus on contradictions for qualitative counterparts. Findings In total, 33% of the responding libraries report having (...) content filters; 50% have not; and a surprising 18% do not know. There is a strong correlation between internet misuse and positive attitudes towards filters, and, reversely, between lack of misuse and lack of active stances concerning filters. Rather than seeing this as weakness, the authors suggest that there is strength in a context-bound flexibility open to practical experience and weighting of values, ethics, legislation and local circumstances. More troublesome indications concern the high deferral of decision-making to local authorities (municipalities) whereby libraries are left with limited insight and influence. Research limitations/implications The situation calls for professional organisations to address political mandate questions, and educational programs to strengthen future information professionals’ knowledge of IT in general; filter issues in specific; and local authority decision-making. The study highlights the need of adequate information professional competences and mandates to decide on and oversee internet regulation. Originality/value To the best of the authors’ knowledge, this is the first internationally published study on content filters in Swedish public libraries. (shrink)