Ethical Reflections of Human Brain Research and Smart Information Systems

open access journalThis case study explores ethical issues that relate to the use of Smart Infor-mation Systems (SIS) in human brain research. The case study is based on the Human Brain Project (HBP), which is a European Union funded project. The project uses SIS to build a research infrastructure aimed at the advancement of neuroscience, medicine and computing. The case study was conducted to assess how the HBP recognises and deal with ethical concerns relating to the use of SIS in human brain research. To under-stand some of the ethical implications of using SIS in human brain research, data was collected through a document review and three semi-structured interviews with partic-ipants from the HBP. Results from the case study indicate that the main ethical concerns with the use of SIS in human brain research include privacy and confidentiality, the security of personal data, discrimination that arises from bias and access to the SIS and their outcomes. Furthermore, there is an issue with the transparency of the processes that are involved in human brain research. In response to these issues, the HBP has put in place different mechanisms to ensure responsible research and innovation through a dedicated pro-gram. The paper provides lessons for the responsible implementation of SIS in research, including human brain research and extends some of the mechanisms that could be employed by researchers and developers of SIS for research in addressing such issues

Secrecy in Educational Practices: Enacting Nested Black Boxes in Cheating and Deception Detection Systems

This paper covers secrecy from the vantage point of recent technological initiatives designed to detect cheating and deception in educational contexts as well as to monitor off-campus social media speech code violations. Many of these systems are developed and implemented by third-party corporate entities who claim practices to be proprietary and secret. The outsourcers involved in these efforts have provided one level of secrecy and educational administrators involved yet another level, thus constructing nested black boxes. Also discussed in this paper is the “paranoid style” of administration, often supported by the surveillance and construction of rosters of potential non-conformists, such as alleged cheaters and speech code violators. The educational technologies described in this article are increasingly applied to workplace practices, with young people being trained in what is deemed acceptable conduct. Secrecy can serve to alter the character of relationships within the educational institutions involved as well as inside the workplaces in which the approaches are increasingly being integrated

Designing the Health-related Internet of Things: Ethical Principles and Guidelines

The conjunction of wireless computing, ubiquitous Internet access, and the miniaturisation of sensors have opened the door for technological applications that can monitor health and well-being outside of formal healthcare systems. The health-related Internet of Things (H-IoT) increasingly plays a key role in health management by providing real-time tele-monitoring of patients, testing of treatments, actuation of medical devices, and fitness and well-being monitoring. Given its numerous applications and proposed benefits, adoption by medical and social care institutions and consumers may be rapid. However, a host of ethical concerns are also raised that must be addressed. The inherent sensitivity of health-related data being generated and latent risks of Internet-enabled devices pose serious challenges. Users, already in a vulnerable position as patients, face a seemingly impossible task to retain control over their data due to the scale, scope and complexity of systems that create, aggregate, and analyse personal health data. In response, the H-IoT must be designed to be technologically robust and scientifically reliable, while also remaining ethically responsible, trustworthy, and respectful of user rights and interests. To assist developers of the H-IoT, this paper describes nine principles and nine guidelines for ethical design of H-IoT devices and data protocols

New Methods in Human Subjects Research: Do We Need a New Ethics?

Online surveys and interviews, the observations of chat rooms or online games, data mining, knowledge discovery in databases (KDD), collecting biomarkers, employing biometrics, using RFID technology - even as implants in the human body - and other related processes all seem to be more promising, cheaper, faster, and comprehensive than conventional methods of human subjects research. But at the same time these new means of gathering information may pose powerful threats to privacy, autonomy, and informed consent. Online research, particularly involving children and minors but also other vulnerable groups such as ethnic or religious minorities, is in urgent need of an adequate research ethics that can provide reasonable and morally justified constraints for human subjects research. The paper at hand seeks to provide some clarification of these new means of information gathering and the challenges they present to moral concepts like -privacy, autonomy, informed consent, beneficence, and justice. Some existing codes of conduct and ethical guidelines are examined to determine whether they provide answers to those challenges and/or whether they can be helpful in the development of principles and regulations governing human subjects research. Finally, some conclusions and recommendations are presented that can help in the ask of formulating an adequate research ethics for human subjects research.Human Subjects Research, Online Research, Biomarkers, Biometrics, Autonomy, Privacy, Informed Consent, Research Ethics

Virtual Clinical Trials: One Step Forward, Two Steps Back

Virtual clinical trials have entered the medical research landscape. Today’s clinical trials recruit subjects online, obtain informed consent online, send treatments such as medications or devices to the subjects’ homes, and require subjects to record their responses online. Virtual clinical trials could be a way to democratize clinical research and circumvent geographical limitations by allowing access to clinical research for people who live far from traditional medical research centers. But virtual clinical trials also depart dramatically from traditional medical research studies in ways that can harm individuals and the public at large. This article addresses the issues presented by virtual clinical trials with regard to: (1) recruitment methods; (2) informed consent; (3) confidentiality; (4) potential risks to the subjects; and (5) the safety and efficacy of treatments that are approved

Ethical Issues in Empirical Studies of Software Engineering

The popularity of empirical methods in software engineering research is on the rise. Surveys, experiments, metrics, case studies, and field studies are examples of empirical methods used to investigate both software engineering processes and products. The increased application of empirical methods has also brought about an increase in discussions about adapting these methods to the peculiarities of software engineering. In contrast, the ethical issues raised by empirical methods have received little, if any, attention in the software engineering literature. This article is intended to introduce the ethical issues raised by empirical research to the software engineering research community, and to stimulate discussion of how best to deal with these ethical issues. Through a review of the ethical codes of several fields that commonly employ humans and artifacts as research subjects, we have identified major ethical issues relevant to empirical studies of software engineering. These issues are illustrated with real empirical studies of software engineering