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Stud Health Technol Inform ; 275: 142-146, 2020 Nov 23.
Artigo em Inglês | MEDLINE | ID: mdl-33227757


We study seven fitness trackers and their associated smartphone apps from a wide variety of manufacturers, and record who they are talking to. Our results suggest that some of them communicate with unexpected third parties, including social networks, advertisement websites, weather services, and various external APIs. This implies that such unanticipated third-parties may glean personal information of users.

Aplicativos Móveis , Telemedicina , Monitores de Aptidão Física , Informações Pessoalmente Identificáveis , Rede Social
Rev. bioét. derecho ; (50): 271-294, nov. 2020. tab
Artigo em Espanhol | IBECS | ID: ibc-191358


La pandemia COVID-19 ha generado impactos sociales y políticos adicionales a los estrictamente sanitarios, llevando de un aparte a que los países, en el contexto de los estados de emergencia decretados, limiten de manera temporal algunos derechos y libertades civiles, para preservar la vida y salud de los ciudadanos; y de otra parte, han acelerado la transformación digital con el desarrollo y uso de herramientas tecnológicas para complementar las medidas de salud pública. Diversos organismos internacionales han expresado su preocupación respecto a la vulneración del derecho a la protección de datos personales en este nuevo escenario, e incluso han propuesto lineamientos éticos a tener en cuenta. En este artículo se analizarán las medidas que han sido implementadas en Colombia con ocasión de la COVID-19, desde la perspectiva del marco jurídico del derecho a la protección de datos personales vigente, y como los principios y derechos que lo componen, pueden ser reinterpretados a la luz de estas nuevas recomendaciones éticas

COVID-19 pandemic has generated additional social and political impacts beyond those strictly related to health, leading countries to, within the context of declared states of emergency, temporarily limit some civil rights and liberties in order to preserve their citizen's life and health. On the other hand, it has accelerated the digital transformation with the development and use of technological tools to complement public health measures. Several international organizations have voiced their concern about the violation of the right to personal data protection in this new scenario and have even proposed ethical guidelines to be taken into account. This article will analyses the measures that have been implemented in Colombia during COVID-19 pandemic, from the actual perspective of the legal framework of the right to personal data protection, and how its principles and rights may be reinterpreted in the light of these new ethical recommendations

La pandèmia COVID-19 ha generat impactes socials I polítics addicionals als estrictament sanitaris, portant d'un a part al fet que els països, en el context dels estats d'emergència decretats, limitin de manera temporal alguns drets I llibertats civils, per preservar la vida I salut dels ciutadans; I d'una altra banda, accelerant la transformació digital amb el desenvolupament I l'ús d'eines tecnològiques per complementar les mesures de salut pública. Diversos organismes internacionals han expressat la seva preocupació pel que fa a la vulneració del dret a la protecció de dades personals en aquest nou escenari, I fins I tot han proposat directrius ètiques a tenir en compte. En aquest article s'analitzaran les mesures que han estat implementades a Colòmbia amb motiu de la COVID-19, des de la perspectiva del marc jurídic del dret a la protecció de dades personals vigent, I com els principis I drets que el componen, poden ser reinterpretats a la llum d'aquestes noves recomanacions ètiques

Humanos , Informações Pessoalmente Identificáveis/ética , Registros Eletrônicos de Saúde/ética , Infecções por Coronavirus/epidemiologia , Pneumonia Viral/epidemiologia , Monitoramento Epidemiológico , Colômbia/epidemiologia
Stud Health Technol Inform ; 273: 129-135, 2020 Sep 04.
Artigo em Inglês | MEDLINE | ID: mdl-33087602


In this paper, we describe a strategy for the development of a genetic analysis comprehensive representation. The primary intention is to ensure the available utilization of genetic analysis results in clinical practice. The system is called Personnel Genetic Card (PGC), and it is developed in cooperation of CIIRC CTU in Prague and the Mediware company. Nowadays, genetic information is more and more part of medicine and life quality services (e.g. nutritional consulting). Therefore, there is necessary to bind genetic information with the clinical phenotype, such as drug metabolism or intolerance to various substances. We proposed a structured form of the record, where we utilize the LOINC® standard to identify genetic test parameters, and several terminology databases for representing specific genetic information (e.g. HGNC, NCBI RefSeq, NCBI dbNSP, HGVS). Further, there are also several knowledge databases (PharmGKB, SNPedia, ClinVar) that collect interpretation for genetic analysis results. In the results of this paper, we describe our idea in the structure and process perspective. The structural perspective includes the representation of the analysis record and its binding with the interpretations. The process perspective describes roles and activities within the PGC system use.

Testes Genéticos , Informações Pessoalmente Identificáveis , Bases de Dados Genéticas , Logical Observation Identifiers Names and Codes , Fenótipo
Annu Int Conf IEEE Eng Med Biol Soc ; 2020: 422-425, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-33018018


Recent developments in wearable sensors demonstrate promising results for monitoring physiological status in effective and comfortable ways. One major challenge of physiological status assessment is the problem of transfer learning caused by the domain inconsistency of biosignals across users or different recording sessions from the same user. We propose an adversarial inference approach for transfer learning to extract disentangled nuisance-robust representations from physiological biosignal data in stress status level assessment. We exploit the trade-off between task-related features and person-discriminative information by using both an adversary network and a nuisance network to jointly manipulate and disentangle the learned latent representations by the encoder, which are then input to a discriminative classifier. Results on cross-subjects transfer evaluations demonstrate the benefits of the proposed adversarial framework, and thus show its capabilities to adapt to a broader range of subjects. Finally we highlight that our proposed adversarial transfer learning approach is also applicable to other deep feature learning frameworks.

Aprendizado Profundo , Aprendizagem , Aprendizado de Máquina , Informações Pessoalmente Identificáveis , Registros
PLoS One ; 15(8): e0237183, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32813741


Personal information is a precious resource, not only for commercial interests but also for the public benefit. Reporting personal location data, for example, may aid efficient traffic flows and sharing one's health status may be a crucial instrument of disease management. We experimentally study individuals' willingness to contribute personal information to information-based public goods. Our data provide evidence that-compared to monetary contributions to public goods-information may be substantially under-provided. We show that the degree of information provision is strongly correlated to the information's implicit (emotional and cognitive) costs. Individual's reluctance to share personal information with high implicit, in particular emotional costs, may seriously limit the effectiveness of information-based public goods.

Disseminação de Informação , Informações Pessoalmente Identificáveis/economia , Privacidade/psicologia , Cognição , Confidencialidade/psicologia , Gerenciamento Clínico , Emoções , Feminino , Seguimentos , Registros de Saúde Pessoal , Nível de Saúde , Humanos , Masculino , Estudantes , Inquéritos e Questionários
PLoS One ; 15(4): e0232037, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32339179


The popularity of social media has increased users' social visibility. However, users' limited ability to control information spread could compromise privacy. People care about how others perceive them. We examined people's concerns for others' evaluations on their behaviors under different degrees of privacy conditions. Using a variant of the dictator game, we induced dictators to self-select into pro-self or pro-social types and asked recipients to give written evaluations of the dictators. We varied the degree of personal information privacy by making the written content known to the corresponding dictators only, all dictators, or either of them with equal chance. Also, the dictators could avoid receiving the message at a price. We showed that pro-self dictators' willingness to pay to conceal messages decreased when information privacy diminished. Thus, results indicated that image concerns wane in an environment where information privacy is weak. Our results contribute to understanding of the privacy paradox.

Comportamento de Escolha , Confidencialidade/psicologia , Informações Pessoalmente Identificáveis , Privacidade/psicologia , Autorrevelação , Comportamento Social , Mídias Sociais , Tomada de Decisões , Feminino , Jogos Experimentais , Humanos , Masculino
Rev. latinoam. enferm. (Online) ; 28: e3319, 2020. tab, graf
Artigo em Inglês | LILACS, BDENF - Enfermagem | ID: biblio-1126992


Objective: to determine the validity and reliability of the Turkish language version of the Moral Distress Questionnaire for nurses. Method: methodological study whose sample consisted of 200 nurses working in the internal medicine and surgery clinics of a university hospital. Data was collected using the personal information form and the Moral Distress Questionnaire for nurses. Results: in the Main Components Analysis, the items were grouped under three factors. Findings regarding confirmatory factor analysis: chi-square goodness: 2.28, goodness of fit index: 0.88, comparative fit index: 0.88, non-normed fit index: 0.86, root mean square error of approximation: 0.07. The Cronbach's alpha coefficient was found to be 0.79 as a result of the analysis conducted in order to test the internal consistency of the scale. It was seen that these three factors explained 44.92% of the total variance. Conclusion: in this present study, the Turkish version of the Moral Distress Questionnaire was found to be valid and reliable for the Turkish society. It is recommended that the Moral Distress Questionnaire for nurses should be used in future studies to be conducted with nurses in order to investigate of issues of ethical dilemma.

Objetivo: determinar a validade e a confiabilidade da versão em idioma turco do Moral Distress Questionnaire para enfermeiros. Método: estudo metodológico cuja amostra foi composta por 200 enfermeiros atuantes nas clínicas de medicina interna e cirurgia de um hospital universitário. Os dados foram coletados por meio do formulário de informações pessoais e do Moral Distress Questionnaire para enfermeiros. Resultados: na Análise de Componentes Principais, os itens foram agrupados em três fatores. Resultados da análise fatorial confirmatória: qualidade do ajuste do qui-quadrado: 2,28, índice de qualidade do ajuste: 0,88, índice de ajuste comparativo: 0,88, índice de ajuste não normatizado: 0,86, raiz quadrada da média do erro de aproximação: 0,07. O coeficiente alfa de Cronbach foi de 0,79 como resultado da análise realizada para testar a consistência interna da escala. Observou-se que esses três fatores explicaram 44,92% da variância total. Conclusão: neste estudo, a versão turca do Moral Distress Questionnaire foi considerada válida e confiável para a sociedade turca. Recomenda-se que o Moral Distress Questionnaire para enfermeiros seja utilizado em estudos futuros a serem conduzidos, com esses profissionais, para investigar questões de dilema ético.

Objetivo: determinar la validación y confiabilidad de la versión en idioma turco del Moral Distress Questionnaire para enfermeros. Método: estudio metodológico cuya muestra estuvo conformada por 200 enfermeras que trabajaban en clínicas médicas y de cirugía internas de un hospital universitario. Los datos se recopilaron utilizando el formulario de información personal y el Cuestionario de Estrés Moral para enfermeros. Resultados: en el Análisis de Componentes Principales, los ítems se agruparon en tres factores. Resultados del análisis factorial confirmatorio: calidad de ajuste de chi-cuadrado: 2,28, índice de bondad de ajuste: 0,88, índice de ajuste comparativo: 0,88, índice de ajuste no normalizado: 0,86, raíz cuadrada del error de aproximación promedio: 0.07. Se determinó que el coeficiente alfa de Cronbach fue de 0,79 como resultado del análisis realizado para comprobar la consistencia interna de la escala. Se observó que estos tres factores explicaban el 44,92% de la varianza total. Conclusión: en el presente estudio, la versión turca del Cuestionario de Estrés Moral resultó ser válida y confiable para la sociedad turca. Se recomienda que el Cuestionario de Estrés Moral para enfermeros se utilice en futuros estudios, con estos profesionales, para investigar cuestiones de dilema ético.

Humanos , Masculino , Feminino , Inquéritos e Questionários , Reprodutibilidade dos Testes , Análise Fatorial , Enfermagem , Gestão da Qualidade , Ética , Informações Pessoalmente Identificáveis , Hospitais , Moral , Enfermeiras e Enfermeiros
PLoS One ; 14(12): e0225688, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31805089


Participatory sensing is gaining popularity as a method for collecting and sharing information from distributed local environments using sensor-rich mobile devices. There are a number of participatory sensing applications currently in wide use, such as location-based service applications (e.g., Waze navigation). Usually, these participatory applications collect tremendous amounts of sensing data containing personal information, including user identity and current location. Due to the high sensitivity of this information, participatory sensing applications need a privacy-preserving mechanism, such as anonymity, to secure and protect personal user data. However, using anonymous identifiers for sensing sources proves difficult when evaluating sensing data trustworthiness. From this perspective, a successful participatory sensing application must be designed to consider two challenges: (1) user privacy and (2) data trustworthiness. To date, a number of privacy-preserving reputation techniques have been proposed to satisfy both of these issues, but the protocols contain several critical drawbacks or are impractical in terms of implementation. In particular, there is no work that can transparently manage user reputation values while also tracing anonymous identities. In this work, we present a blockchain-based privacy-preserving reputation framework called BPRF to transparently manage user reputation values and provide a transparent tracing process for anonymous identities. The performance evaluation and security analysis show that our solution is both practical and able to satisfy the two requirements for user privacy and data trustworthiness.

Blockchain , Privacidade , Telefone Celular/instrumentação , Humanos , Disseminação de Informação , Informações Pessoalmente Identificáveis
Stud Health Technol Inform ; 264: 1135-1139, 2019 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-31438102


Health systems advance towards personalized, preventive, predictive, participative precision (5P) medicine, considering the individual's health status, contexts and conditions. This results in fully distributed, highly dynamic, highly complex business systems and processes with multiple, comprehensively cooperating actors from different specialty and policy domains, using their specific methodologies, terminologies, ontologies, knowledge and skills. Rules and regulations governing the business process as well as the organizational, legal and individual conditions, thereby controlling the behavior of the system, are called policies. Trust and confidence needed for running such system are strongly impacted by security and privacy concerns controlled by corresponding policies. The most comprehensive policy dealing with security and privacy requirements and principles in any business collecting, processing and sharing personal identifiable information (PII) is the recently implemented European General Data Protection Regulation (GDPR). This paper investigates how GDPR supports healthcare transformation and how this can be implemented based on international standards and specifications.

Segurança Computacional , Assistência à Saúde , Medicina , Informações Pessoalmente Identificáveis , Privacidade
Nat Commun ; 10(1): 3069, 2019 07 23.
Artigo em Inglês | MEDLINE | ID: mdl-31337762


While rich medical, behavioral, and socio-demographic data are key to modern data-driven research, their collection and use raise legitimate privacy concerns. Anonymizing datasets through de-identification and sampling before sharing them has been the main tool used to address those concerns. We here propose a generative copula-based method that can accurately estimate the likelihood of a specific person to be correctly re-identified, even in a heavily incomplete dataset. On 210 populations, our method obtains AUC scores for predicting individual uniqueness ranging from 0.84 to 0.97, with low false-discovery rate. Using our model, we find that 99.98% of Americans would be correctly re-identified in any dataset using 15 demographic attributes. Our results suggest that even heavily sampled anonymized datasets are unlikely to satisfy the modern standards for anonymization set forth by GDPR and seriously challenge the technical and legal adequacy of the de-identification release-and-forget model.

Análise de Dados , Anonimização de Dados , Informações Pessoalmente Identificáveis , Conjuntos de Dados como Assunto , Funções Verossimilhança , Distribuição Normal
J Law Med Ethics ; 47(2): 213-231, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31298108


The revised Common Rule includes a new option for the conduct of secondary research with identifiable data and biospecimens: regulatory broad consent. Motivated by concerns regarding autonomy and trust in the research enterprise, regulators had initially proposed broad consent in a manner that would have rendered it the exclusive approach to secondary research with all biospecimens, regardless of identifiability. Based on public comments from both researchers and patients concerned that this approach would hinder important medical advances, however, regulators decided to largely preserve the status quo approach to secondary research with biospecimens and data. The Final Rule therefore allows such research to proceed without specific informed consent in a number of circumstances, but it also offers regulatory broad consent as a new, optional pathway for secondary research with identifiable data and biospecimens. In this article, we describe the parameters of regulatory broad consent under the new rule, explain why researchers and research institutions are unlikely to utilize it, outline recommendations for regulatory broad consent issued by the Secretary's Advisory Committee on Human Research Protections (SACHRP), and sketch an empirical research agenda for the sorts of questions about regulatory broad consent that remain to be answered as the research community embarks on Final Rule implementation.

Pesquisa Biomédica/ética , Pesquisa Biomédica/legislação & jurisprudência , Experimentação Humana/legislação & jurisprudência , Consentimento Livre e Esclarecido/legislação & jurisprudência , Consentimento Presumido/legislação & jurisprudência , Comitês Consultivos , Bancos de Espécimes Biológicos , Confidencialidade/normas , Anonimização de Dados/normas , Humanos , Informações Pessoalmente Identificáveis/normas
Pac Symp Biocomput ; 24: 415-426, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30864342


Anonymized electronic health records (EHR) are often used for biomedical research. One persistent concern with this type of research is the risk for re-identification of patients from their purportedly anonymized data. Here, we use the EHR of 731,850 de-identified patients to demonstrate that the average patient is unique from all others 98.4% of the time simply by examining what laboratory tests have been ordered for them. By the time a patient has visited the hospital on two separate days, they are unique in 72.3% of cases. We further present a computational study to identify how accurately the records from a single day of care can be used to re-identify patients from a set of 99 other patients. We show that, given a single visit's laboratory orders (even without result values) for a patient, we can re-identify the patient at least 25% of the time. Furthermore, we can place this patient among the top 10 most similar patients 47% of the time. Finally, we present a proof-of-concept technique using a variational autoencoder to encode laboratory results into a lower-dimensional latent space. We demonstrate that releasing latentspace encoded laboratory orders significantly improves privacy compared to releasing raw laboratory orders (<5% re-identification), while preserving information contained within the laboratory orders (AUC of >0.9 for recreating encoded values). Our findings have potential consequences for the public release of anonymized laboratory tests to the biomedical research community. We note that our findings do not imply that laboratory tests alone are personally identifiable. In the attack scenario presented here, reidentification would require a threat actor to possess an external source of laboratory values which are linked to personal identifiers at the start.

Técnicas de Laboratório Clínico/estatística & dados numéricos , Confidencialidade , Anonimização de Dados , Informações Pessoalmente Identificáveis , Algoritmos , Biologia Computacional , Registros Eletrônicos de Saúde/estatística & dados numéricos , Humanos , Informações Pessoalmente Identificáveis/estatística & dados numéricos
Anat Sci Educ ; 12(6): 636-644, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-30661289


In this novel study, the researchers quantify cadaver information provided to Physical Therapy (PT) and Physician Assistant (PA) anatomy faculty and ask what portion of that information is then shared with students. Descriptive statistics were used to the describe demographics of the study respondents and to report survey responses. The majority (60% or greater) of faculty who teach anatomy to PT and PA students have clinical degrees matching the student groups they teach. Chi-square analysis showed no appreciable difference (P < 0.001) between PT and PA anatomy faculty in the amount of cadaver information they receive or then share with students. There was a difference in the type of cadaver information (identifying vs. non-identifying) that is received and then shared by these faculty. Faculty are more likely to receive non-identifying cadaver information (93%) than identifying information (40%) (P < 0.0001) and share non-identifying information (83%) than identifying information (26%) with students (P < 0.0003). Interestingly, there is no consensus as to whether sharing cadaver information is respectful or disrespectful to those who donate their bodies for anatomy education and research. Further research is warranted into the reasons anatomy faculty withhold cadaver information from students and in the value, if any, for students knowing more about the cadavers they are learning from.

Anatomia/educação , Cadáver , Educação Profissionalizante/métodos , Docentes/psicologia , Informações Pessoalmente Identificáveis/ética , Anatomia/ética , Revelação/ética , Revelação/estatística & dados numéricos , Dissecação/ética , Educação Profissionalizante/ética , Docentes/estatística & dados numéricos , Humanos , Fisioterapeutas/educação , Fisioterapeutas/psicologia , Assistentes Médicos/educação , Assistentes Médicos/psicologia , Aprendizagem Baseada em Problemas/ética , Aprendizagem Baseada em Problemas/métodos , Inquéritos e Questionários/estatística & dados numéricos
Health Informatics J ; 25(4): 1675-1691, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-30204037


Wearable technologies have created fascinating opportunities for patients to treat chronic pain in a discreet, mobile fashion. However, many of these health wearables require patients to disclose sensitive information, including health information (e.g., heart rate, glucose levels) and personal information (location, email, name, etc.). Individuals using wearables for treatment of chronic pain may sacrifice social health elements, including their privacy, in exchange for better physical and mental health. Utilizing communication privacy management, a popular disclosure theory, this article explores the policy and ethical ramifications of patients disclosing sensitive health information in exchange for better health treatment and relief of chronic pain. The article identifies scenarios where a user must disclose information, and what factors motivate or dissuade disclosure, and ultimately the use of a health wearable. Practical implications of this conceptual article include an improved understanding of how and why consumers may disclose personal data to health wearables, and potential impacts for public policy and ethics regarding how wearables and their manufacturers entice disclosure of private health information.

Manejo da Dor/normas , Informações Pessoalmente Identificáveis/legislação & jurisprudência , Medição de Risco/normas , Dispositivos Eletrônicos Vestíveis/normas , Revelação/ética , Revelação/legislação & jurisprudência , Humanos , Motivação , Dor/psicologia , Manejo da Dor/métodos , Manejo da Dor/psicologia , Informações Pessoalmente Identificáveis/normas , Informações Pessoalmente Identificáveis/estatística & dados numéricos , Medição de Risco/métodos , Medição de Risco/estatística & dados numéricos , Dispositivos Eletrônicos Vestíveis/efeitos adversos , Dispositivos Eletrônicos Vestíveis/estatística & dados numéricos
Rev. derecho genoma hum ; (n.extr): 37-54, 2019.
Artigo em Espanhol | IBECS | ID: ibc-191276


Los nuevos reglamentos europeos sobre ensayos clínicos, dispositivos médicos y el nuevo Reglamento Europeo sobre protección de datos, incorporan varios preceptos para garantizar el derecho a la vida privada y la protección de datos en materia de salud. Sin embargo, la fragmentación de la regulación, el riesgo de sufrir ciber-ataques y violaciones de seguridad, las filtraciones masivas de big data, o el uso no autorizado de datos biométricos nos llevan a poner en duda el papel predominante que la regulación otorga al consentimiento previo del propietario en la cesión de los datos personales como clave del sistema. En este sentido, las normas de protección de datos generales del nuevo reglamento prohíben el tratamiento de los datos personales relativos a la salud, pero las numerosas excepciones a esta regla general pueden limitar los derechos del interesado. Además, la falta de medidas técnicas y organizativas comunes para garantizar el respeto del principio de minimización de datos y la falta de obligación de aplicar medidas de compatibilidad para intercambiar, cuando sea necesario, los datos obtenidos en los Estados miembros pueden poner en grave riesgo los beneficios de la regulación y amenazar la efectividad del derecho a la privacidad

New European Regulations on clinical trials, medical devices or the European Regulation on data protection, Regulation (EU) 2016/679 of the European Parliament and of the Council of April 27, 2016, incorporate several rules to ensure the right to privacy and the data protection in the field of health. However, the fragmentation of the regulation, the risk of cyber-attacks and security breaches, the massive leaks of big data or the unauthorized use of biometric data, lead us to question about the dominant role that the regulation gives to the prior consent of the owner in the transfer of personal data as a key of the system. In this sense, the rules of protection of general data of the new Regulation prohibit the treatment of the personal data relating to health, but numerous exceptions to this general rule, may limit the rights of the person concerned. In addition, the lack of common technical and organizational measures to ensure the respect of the principle of data minimization and lack of obligation to implement measures of support for exchange, where necessary, the data obtained in the States Members can put at risk the benefits of regulation and threaten the effectiveness of the right to privacy

Humanos , Pesquisa Biomédica/ética , Relatório de Pesquisa/legislação & jurisprudência , Registros Médicos/legislação & jurisprudência , Big Data , Mineração de Dados/ética , Informações Pessoalmente Identificáveis/legislação & jurisprudência , Privacidade Genética/legislação & jurisprudência , Processamento Eletrônico de Dados/legislação & jurisprudência , Segurança Computacional/legislação & jurisprudência , Confidencialidade/ética , Responsabilidade Legal , Biometria/métodos , Impressões Digitais de DNA/legislação & jurisprudência , Consentimento Livre e Esclarecido/legislação & jurisprudência , Consentimento Informado por Menores/legislação & jurisprudência