Bioethics in the big data era: health care and beyond / La bioética en el época del "big data": la salud y más allá / La bioètica en l’època del 'big data': la salut i més enllà

"Big data" and data-intensive research approaches are rapidly gaining momentum in health and biomedical research, with potential to transform health at all levels from personal to public. The use of "big data" for health research, however, raises a number of ethical challenges. In this paper I discuss ethical aspects of the advent of big data in health. I argue that although public discourse has focused on immediate concerns relating to use of individuals' information, "big health data" requires us to explore alternative conceptual approaches to research ethics, including the "social contract" model. Further, we need to think beyond health research uses of data to the social consequences of big data epistemology and practice, and the moral implications of "datafying" the human

La ciencia de "big data" (o datos masivos) lleva mucho potencial para la investigación biomédica, y promete una transformación en la salud y la asistencia médica. Al mismo tiempo, el uso de datos de salud en investigación presenta varios retos éticos. En este artículo, exploraré aspectos éticos de la llegada del "big data" al ámbito de la salud. Aunque el discurso público y regulatorio se ha focalizado mucho en el uso de datos del individuo, lidiar con los nuevos desafíos de datos masivos requiere considerar enfoques alternativos a la ética de la investigación, tal como el modelo del "contrato social". Hay que pensar más allá del uso de datos para investigaciones en salud y contemplar las consecuencias sociales de la epistemología y la práctica de "big data" y las implicancias morales de la "datificación" del humano

La ciència del "big data" (o dades massives) comporta un enorme potencial per a la recerca biomèdica, i promet ocasionar una gran transformació en l'àmbit de la salut i l'assistència mèdica. Al mateix temps, l'ús de dades de salut en recerca presenta diversos reptes ètics. En aquest article, analitzaré els aspectes ètics de l'arribada del "big data" a l'àmbit de la salut. Encara que el discurs públic i regulador s'ha focalitzat principalment en l'ús de les dades personals, bregar amb els nous desafiaments que comporten la irrupció de les dades massives requereix enfocaments alternatius a l'ètica de la recerca, com ara el model del «contracte social». A més, cal pensar més enllà de l'ús de dades per a recerques en salut i tenir en compte les conseqüències socials de l'epistemologia i la pràctica del "big data" i les implicacions morals de la "datificació" d'allò que és humà

Big Data in Genomics: ethical challenges and risks / 'Big Data' en genómica: retos y riesgos éticos / 'Big Data' en genòmica: reptes i riscos ètics

Genomic information is a class of Big Data in expanding use thanks to technological developments. Here, we review three categories of ethical risks and challenges associated with genomic information: privacy issues, the management of incidental findings, and challenges in data storage and sharing. First, we need to implement strong mechanisms to protect privacy, but genomic data faces specific risks and we need to acknowledge the possibility of re-identification. Proper usage of genomic information has to be regulated, including recommendations on incidental finding management. Also, clear policies for data sharing and explicit efforts to promote central repositories of genomic data should be established. However, technology and new applications of genetic information will develop fast and we should anticipate potential new risks

La información genómica es un tipo de 'Big Data' de uso creciente debido a mejoras tecnológicas. En este trabajo, revisamos tres grupos de retos y riesgos éticos asociados con esta información: riesgos de privacidad, gestión de los hallazgos incidentales y retos en el almacenamiento y compartición de datos. En primer lugar, debemos establecer mecanismos sólidos para proteger la privacidad, pero los datos genómicos presentan riesgos específicos y debemos admitir la posibilidad de reidentificación. Hay que regular el uso adecuado de la información genómica incluyendo recomendaciones para la gestión de los hallazgos incidentales. También hay que establecer políticas claras para compartir datos y fomentar el uso de repositorios de datos genómicos. No obstante, debemos esperar desarrollos rápidos en la tecnología y nuevas aplicaciones de la información genética, y debemos anticiparnos a los futuros riesgos potenciales

La informació genòmica és un tipus de 'Big Data' d’ús creixent a causa de millores tecnològiques. En aquest treball, revisem tres grups de reptes i riscos ètics associats amb aquesta informació: riscos de privadesa, gestió de les troballes incidentals i reptes en l'emmagatzematge i compartició de dades. En primer lloc, hem d’establir mecanismes sòlids per protegir la privadesa, però les dades genòmiques presenten riscos específics i hem d'admetre la possibilitat de reidentificació. Cal regular l'ús adequat de la informació genòmica incloent-hi recomanacions per a la gestió de les troballes incidentals. També cal establir polítiques clares per compartir dades i fomentar l'ús de repositoris de dades genòmiques. No obstant això, hem d'esperar desenvolupaments ràpids a la tecnologia i noves aplicacions de la informació genètica, i hem d'anticipar-nos als riscos potencials futurs

Efectos de variables tecnológicas y de la titulación universitaria en la creatividad ideacional / Effects of tecnological variables and the university degree in the creativity ideational

El objetivo del presente estudio fue examinar los efectos de tres variables -herramientas informáticas, objetos tecnológicos y titulación universitaria- en la generación de ideas creativas tanto a nivel individual como grupal. La investigación se llevó a cabo con una muestra de 112 alumnos de la Universidad Pública de Navarra (España) organizados en diferentes grupos experimentales y de control según las exigencias de las hipótesis planteadas. La intervención consistió en la ejecución de actividades que requerían a los sujetos la elaboración de ideas sobre los siguientes campos: soluciones a un problema, utilidades de algunos objetos y mejoras de otros objetos. Los resultados revelaron que los sujetos que trabajaron tanto con herramientas informáticas como con objetos tecnológicos y que pertenecían a la titulación de Ingeniería Técnica en Informática de Gestión, enunciaron mayor número de ideas en las distintas actividades de intervención que los sujetos que trabajaron sin herramientas informáticas, con objetos convencionales y que pertenecían a la titulación de Trabajo Social. Finalmente, se ofrecen en este estudio algunas conclusiones relevantes (AU)

The aim of the present study was to examine the effects of three variables -computer tools, technological objects and university degree- in the generation of creative ideas so much to individual level as group. The research was carried out by a sample of 112 pupils of the Public University of Navarre (Spain) organized in different experimental and control groups according to the requirements of the raised hypotheses. The intervention consisted of the execution of activities that required the subjects the development of ideas on the following fields: solutions to a problem, utilities of some objects and improvements of other objects. The results revealed that the subjects that worked both with computer tools and with technological objects and that belonged to the degree of Technical Engineering in Computer Science of Management, enunciated major number of ideas in the different activities of intervention that the subjects that worked without computer tools, with conventional objects and that belonged to the degree of Social Work. Finally, some relevant conclusions offer in this study (AU)

[Facing the challenges of ubiquitous computing in the health care sector]. / Herausforderungen durch ubiquitäres Computing im Gesundheitsbereich.

The steady progress of microelectronics, communications and information technology will enable the realisation of the vision for "ubiquitous computing" where the Internet extends into the real world embracing everyday objects. The necessary technical basis is already in place. Due to their diminishing size, constantly falling price and declining energy consumption, processors, communications modules and sensors are being increasingly integrated into everyday objects today. This development is opening up huge opportunities for both the economy and individuals. In the present paper we discuss possible applications, but also technical, social and economic barriers to a wide-spread use of ubiquitous computing in the health care sector.

Strategies for health data exchange for secondary, cross-institutional clinical research.

Secondary use of health data has a vital role in improving and advancing medical knowledge. While digital health records offer scope for facilitating the flow of data to secondary uses, it remains essential that steps are taken to respect wishes of the patient regarding secondary usage, and to ensure the privacy of the patient during secondary use scenarios. Consent, together with depersonalisation and its related concepts of anonymisation, pseudonymisation, and data minimisation are key methods used to provide this protection. This paper gives an overview of technical, practical, legal, and ethical aspects of secondary data use and discusses their implementation in the multi-institutional @neurIST research project.

The use of distributed displays of operating room video when real-time occupancy status was available.

INTRODUCTION: On the day of surgery, real-time information of both room occupancy and activities within the operating room (OR) is needed for management of staff, equipment, and unexpected events. METHODS: A status display system showed color OR video with controllable image quality and showed times that patients entered and exited each OR (obtained automatically). The system was installed and its use was studied in a 6-OR trauma suite and at four locations in a 19-OR tertiary suite. Trauma staff were surveyed for their perceptions of the system. RESULTS: Evidence of staff acceptance of distributed OR video included its operational use for >3 yr in the two suites, with no administrative complaints. Individuals of all job categories used the video. Anesthesiologists were the most frequent users for more than half of the days (95% confidence interval [CI] >50%) in the tertiary ORs. The OR charge nurses accessed the video mostly early in the day when the OR occupancy was high. In comparison (P < 0.001), anesthesiologists accessed it mostly at the end of the workday when occupancy was declining and few cases were starting. Of all 30-min periods during which the video was accessed in the trauma suite, many accesses (95% CI >42%) occurred in periods with no cases starting or ending (i.e., the video was used during the middle of cases). The three stated reasons for using video that had median surveyed responses of "very useful" were "to see if cases are finished," "to see if a room is ready," and "to see when cases are about to finish." CONCLUSIONS: Our nurses and physicians both accepted and used distributed OR video as it provided useful information, regardless of whether real-time display of milestones was available (e.g., through anesthesia information system data).