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https://www.readbyqxmd.com/read/28336804/beyond-privacy-and-exposure-ethical-issues-within-citizen-facing-analytics
#1
Peter Grindrod
We discuss the governing forces for analytics, especially concerning citizens' behaviours and their transactions, that depend on which of three spheres of operation an institution is in (corporate, public sector/government and academic). We argue that aspirations and missions also differ by sphere even as digital spaces have drawn these spheres ever closer together. We propose that citizens' expectations and implicit permissions for any exploitation of their data require the perception of a fair balance of benefits, which should be transparent (accessible to citizens) and justifiable...
December 28, 2016: Philosophical Transactions. Series A, Mathematical, Physical, and Engineering Sciences
https://www.readbyqxmd.com/read/28336803/facilitating-the-ethical-use-of-health-data-for-the-benefit-of-society-electronic-health-records-consent-and-the-duty-of-easy-rescue
#2
Sebastian Porsdam Mann, Julian Savulescu, Barbara J Sahakian
Advances in data science allow for sophisticated analysis of increasingly large datasets. In the medical context, large volumes of data collected for healthcare purposes are contained in electronic health records (EHRs). The real-life character and sheer amount of data contained in them make EHRs an attractive resource for public health and biomedical research. However, medical records contain sensitive information that could be misused by third parties. Medical confidentiality and respect for patients' privacy and autonomy protect patient data, barring access to health records unless consent is given by the data subject...
December 28, 2016: Philosophical Transactions. Series A, Mathematical, Physical, and Engineering Sciences
https://www.readbyqxmd.com/read/28336802/the-dynamics-of-big-data-and-human-rights-the-case-of-scientific-research
#3
Effy Vayena, John Tasioulas
In this paper, we address the complex relationship between big data and human rights. Because this is a vast terrain, we restrict our focus in two main ways. First, we concentrate on big data applications in scientific research, mostly health-related research. And, second, we concentrate on two human rights: the familiar right to privacy and the less well-known right to science. Our contention is that human rights interact in potentially complex ways with big data, not only constraining it, but also enabling it in various ways; and that such rights are dynamic in character, rather than fixed once and for all, changing in their implications over time in line with changes in the context we inhabit, and also as they interact among themselves in jointly responding to the opportunities and risks thrown up by a changing world...
December 28, 2016: Philosophical Transactions. Series A, Mathematical, Physical, and Engineering Sciences
https://www.readbyqxmd.com/read/28336798/data-science-ethics-in-government
#4
REVIEW
Cat Drew
Data science can offer huge opportunities for government. With the ability to process larger and more complex datasets than ever before, it can provide better insights for policymakers and make services more tailored and efficient. As with all new technologies, there is a risk that we do not take up its opportunities and miss out on its enormous potential. We want people to feel confident to innovate with data. So, over the past 18 months, the Government Data Science Partnership has taken an open, evidence-based and user-centred approach to creating an ethical framework...
December 28, 2016: Philosophical Transactions. Series A, Mathematical, Physical, and Engineering Sciences
https://www.readbyqxmd.com/read/28336797/privacy-is-an-essentially-contested-concept-a-multi-dimensional-analytic-for-mapping-privacy
#5
Deirdre K Mulligan, Colin Koopman, Nick Doty
The meaning of privacy has been much disputed throughout its history in response to wave after wave of new technological capabilities and social configurations. The current round of disputes over privacy fuelled by data science has been a cause of despair for many commentators and a death knell for privacy itself for others. We argue that privacy's disputes are neither an accidental feature of the concept nor a lamentable condition of its applicability. Privacy is essentially contested. Because it is, privacy is transformable according to changing technological and social conditions...
December 28, 2016: Philosophical Transactions. Series A, Mathematical, Physical, and Engineering Sciences
https://www.readbyqxmd.com/read/28336794/the-ethics-of-smart-cities-and-urban-science
#6
Rob Kitchin
Software-enabled technologies and urban big data have become essential to the functioning of cities. Consequently, urban operational governance and city services are becoming highly responsive to a form of data-driven urbanism that is the key mode of production for smart cities. At the heart of data-driven urbanism is a computational understanding of city systems that reduces urban life to logic and calculative rules and procedures, which is underpinned by an instrumental rationality and realist epistemology...
December 28, 2016: Philosophical Transactions. Series A, Mathematical, Physical, and Engineering Sciences
https://www.readbyqxmd.com/read/28327897/towards-a-global-cancer-knowledge-network-dissecting-the-current-international-cancer-genomic-sequencing-landscape
#7
D J Vis, J Lewin, R G Liao, M Mao, F Andre, R L Ward, F Calvo, B T Teh, A A Camargo, B M Knoppers, C Sawyers, L F A Wessels, M Lawler, L L Siu, E Voest
Background: While next generation sequencing has enhanced our understanding of the biological basis of malignancy, current knowledge on global practices for sequencing cancer samples is limited. To address this deficiency, we developed a survey to provide a snapshot of current sequencing activities globally, identify barriers to data sharing and use this information to develop sustainable solutions for the cancer research community. Methods: A multi-item survey was conducted assessing demographics, clinical data collection, genomic platforms, privacy/ethics concerns, funding sources and data sharing barriers for sequencing initiatives globally...
February 3, 2017: Annals of Oncology: Official Journal of the European Society for Medical Oncology
https://www.readbyqxmd.com/read/28321550/ethical-implications-of-the-electronic-health-record-in-the-service-of-the-patient
#8
Lois Snyder Sulmasy, Ana María López, Carrie A Horwitch
Electronic health records (EHRs) provide benefits for patients, physicians, and clinical teams, but also raise ethical questions. Navigating how to provide care in the digital age requires an assessment of the impact of the EHR on patient care and the patient-physician relationship. EHRs should facilitate patient care and, as an essential component of that care, support the patient-physician relationship. Billing, regulatory, research, documentation, and administrative functions determined by the operational requirements of health care systems, payers, and others have resulted in EHRs that are better able to satisfy such external functions than to ensure that patient care needs are met...
March 20, 2017: Journal of General Internal Medicine
https://www.readbyqxmd.com/read/28319151/ethical-problems-in-an-era-where-disasters-have-become-a-part-of-daily-life-a-qualitative-study-of-healthcare-workers-in-turkey
#9
M Murat Civaner, Kevser Vatansever, Kayihan Pala
BACKGROUND: Natural disasters, armed conflict, migration, and epidemics today occur more frequently, causing more death, displacement of people and economic loss. Their burden on health systems and healthcare workers (HCWs) is getting heavier accordingly. The ethical problems that arise in disaster settings may be different than the ones in daily practice, and can cause preventable harm or the violation of basic human rights. Understanding the types and the determinants of ethical challenges is crucial in order to find the most benevolent action while respecting the dignity of those affected people...
2017: PloS One
https://www.readbyqxmd.com/read/28303240/ensuring-privacy-when-integrating-patient-based-datasets-new-methods-and-developments-in-record-linkage
#10
Adrian P Brown, Anna M Ferrante, Sean M Randall, James H Boyd, James B Semmens
In an era where the volume of structured and unstructured digital data has exploded, there has been an enormous growth in the creation of data about individuals that can be used for understanding and treating disease. Joining these records together at an individual level provides a complete picture of a patient's interaction with health services and allows better assessment of patient outcomes and effectiveness of treatment and services. Record linkage techniques provide an efficient and cost-effective method to bring individual records together as patient profiles...
2017: Frontiers in Public Health
https://www.readbyqxmd.com/read/28302050/implementation-of-clinical-research-trials-using-web-based-and-mobile-devices-challenges-and-solutions
#11
EDITORIAL
Roy Eagleson, Luis Altamirano-Diaz, Alex McInnis, Eva Welisch, Stefanie De Jesus, Harry Prapavessis, Meghan Rombeek, Jamie A Seabrook, Teresa Park, Kambiz Norozi
BACKGROUND: With the increasing implementation of web-based, mobile health interventions in clinical trials, it is crucial for researchers to address the security and privacy concerns of patient information according to high ethical standards. The full process of meeting these standards is often made more complicated due to the use of internet-based technology and smartphones for treatment, telecommunication, and data collection; however, this process is not well-documented in the literature...
March 17, 2017: BMC Medical Research Methodology
https://www.readbyqxmd.com/read/28282721/ethical-issues-surrounding-personalized-medicine-a-literature-review
#12
Pooneh Salari, Bagher Larijani
More than a decade ago, personalized medicine was presented in modern medicine. Personalized medicine means that the right drug should be prescribed for the right patient based on genetic data. No doubt is developing medical sciences, and its shift into personalized medicine complicates ethical challenges more than before. In this review, we categorized all probable ethical considerations of personalized medicine in research and development and service provision. Based on our review, extensive changes in healthcare system including ethical changes are needed to overcome the ethical obstacles including knowledge gap and informed consent, privacy and confidentiality and availability of healthcare services...
March 2017: Acta Medica Iranica
https://www.readbyqxmd.com/read/28272533/paternity-testing-under-the-cloak-of-recreational-genetics
#13
Nathalie Moray, Katherina E Pink, Pascal Borry, Maarten Hd Larmuseau
Direct-to-consumer (DTC) internet companies are selling widely advertised and highly popular genetic ancestry tests to the broad public. These tests are often classified as falling within the scope of so-called 'recreational genetics', but little is known about the impact of using these services. In this study, a particular focus is whether minors (and under what conditions) should be able to participate in the use of these DTC tests. Current ancestry tests are easily able to reveal whether participants are related and can, therefore, also reveal misattributed paternity, with implications for the minors and adults involved in the testing...
March 8, 2017: European Journal of Human Genetics: EJHG
https://www.readbyqxmd.com/read/28249603/the-importance-of-professional-values-from-clinical-nurses-perspective-in-hospitals-of-a-medical-university-in-iran
#14
Batool Poorchangizi, Jamileh Farokhzadian, Abbas Abbaszadeh, Moghaddameh Mirzaee, Fariba Borhani
BACKGROUND: Today, nurses are required to have knowledge and awareness concerning professional values as standards to provide safe and high-quality ethical care. Nurses' perspective on professional values affects decision-making and patient care. Therefore, the present study aimed to investigate the importance of professional values from clinical nurses' perspective. METHODS: The present cross-sectional study was conducted in 2016 in four educational hospitals of Kerman University of Medical Sciences, Iran...
March 1, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28246069/-back-on-track-a-mobile-app-observational-study-using-apple-s-researchkit-framework
#15
Martin Zens, Peter Woias, Norbert P Suedkamp, Philipp Niemeyer
BACKGROUND: In March 2015, Apple Inc announced ResearchKit, a novel open-source framework intended to help medical researchers to easily create apps for medical studies. With the announcement of this framework, Apple presented 5 apps built in a beta phase based on this framework. OBJECTIVE: The objective of this study was to better understand decision making in patients with acute anterior cruciate ligament (ACL) ruptures. Here, we describe the development of a ResearchKit app for this study...
February 28, 2017: JMIR MHealth and UHealth
https://www.readbyqxmd.com/read/28244455/epidemiological-and-survival-analysis-of-triple-negative-breast-cancer-cases-in-a-retrospective-multicenter-study
#16
R Sarin, L Khandrika, Rnm Hanitha, A Avula, M Batra, S Kaul, H Raj, S Shivkumar, S Gupta, E Khan, Tps Bhandari, Svss Prasad, V A Reddy, G Swarnalata, M Bakre, S Chatterjee, J Jain
INTRODUCTION: This is a retrospective study with data collected from breast cancer cases from five major Apollo Hospitals across India, as part of a biobanking process. One aspect of our study focused specifically on data from triple-negative breast cancer (TNBC) cases. The aim of this study was to analyze epidemiology, treatment options, and survival of the patients with TNBC. Our goal was to draw conclusions on the preponderance of the disease and also to understand the outcomes using the existing therapy options...
July 2016: Indian Journal of Cancer
https://www.readbyqxmd.com/read/28238498/legal-social-ethical-and-medical-perspectives-on-the-care-of-the-statutory-rape-adolescent-in-the-emergency-department
#17
Shiu-Lin Tsai, Elvira Acosta, Toni Cardenas, Jeremy K Sigall, Kevin Van Geem
Rapes involving adolescents who present to the emergency department (ED) are fraught with ethical and legal complexities and are often emotionally turbulent for patients, their families, and medical providers. Management requires a thoughtful approach from multiple standpoints, including legal, psychosocial, ethical, and medical ones. However, there is no standardized sexual assault education for emergency medicine residents, and management practices vary widely.(1,2) We present a hypothetical statutory rape case based on real cases that occurred in New York City and bring together the perspectives of an attorney on the legal parameters, two social workers on the psychosocial issues, an ethicist on the moral considerations, and a pediatric emergency physician-who is also a sexual assault forensic examiner-on the medical treatments...
February 24, 2017: Annals of Emergency Medicine
https://www.readbyqxmd.com/read/28221067/ethical-concerns-for-telemental-health-therapy-amidst-governmental-surveillance
#18
Samuel D Lustgarten, Alexander J Colbow
Technology, infrastructure, governmental support, and interest in mental health accessibility have led to a burgeoning field of telemental health therapy (TMHT). Psychologists can now provide therapy via computers at great distances and little cost for parties involved. Growth of TMHT within the U.S. Department of Veterans Affairs and among psychologists surveyed by the American Psychological Association (APA) suggests optimism in this provision of services (Godleski, Darkins, & Peters, 2012; Jacobsen & Kohout, 2010)...
February 2017: American Psychologist
https://www.readbyqxmd.com/read/28207365/using-social-media-as-a-research-recruitment-tool-ethical-issues-and-recommendations
#19
Luke Gelinas, Robin Pierce, Sabune Winkler, I Glenn Cohen, Holly Fernandez Lynch, Barbara E Bierer
The use of social media as a recruitment tool for research with humans is increasing, and likely to continue to grow. Despite this, to date there has been no specific regulatory guidance and there has been little in the bioethics literature to guide investigators and institutional review boards (IRBs) faced with navigating the ethical issues such use raises. We begin to fill this gap by first defending a nonexceptionalist methodology for assessing social media recruitment; second, examining respect for privacy and investigator transparency as key norms governing social media recruitment; and, finally, analyzing three relatively novel aspects of social media recruitment: (i) the ethical significance of compliance with website "terms of use"; (ii) the ethics of recruiting from the online networks of research participants; and (iii) the ethical implications of online communication from and between participants...
March 2017: American Journal of Bioethics: AJOB
https://www.readbyqxmd.com/read/28186611/-ethical-issues-of-oocyte-donation
#20
Yanjin Liu, Libai Cai
The birth and development of oocyte donation technology have brought hope for women with poor ovarian reserve and repeated failure for in vitro fertilization, as well as for those with chromosomal abnormalities, premature ovarian failure, or at perimenopausal or menopausal stages. It has not only preserved their reproductive right, but also stabilized their families and increased social harmony. However, this technology does not only involve infertile couples themselves, but also social and ethical issues concerning their families and the society...
February 10, 2017: Zhonghua Yi Xue Yi Chuan Xue za Zhi, Zhonghua Yixue Yichuanxue Zazhi, Chinese Journal of Medical Genetics
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