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https://www.readbyqxmd.com/read/28423805/preventing-unintended-disclosure-of-personally-identifiable-data-following-anonymisation
#1
Chris Smith
Errors and anomalies during the capture and processing of health data have the potential to place personally identifiable values into attributes of a dataset that are expected to contain non-identifiable values. Anonymisation focuses on those attributes that have been judged to enable identification of individuals. Attributes that are judged to contain non-identifiable values are not considered, but may be included in datasets that are shared by organisations. Consequently, organisations are at risk of sharing datasets that unintendedly disclose personally identifiable values through these attributes...
2017: Studies in Health Technology and Informatics
https://www.readbyqxmd.com/read/28423747/establishment-of-requirements-and-methodology-for-the-development-and-implementation-of-greymatters-a-memory-clinic-information-system
#2
Archana Tapuria, Matt Evans, Vasa Curcin, Tony Austin, Nathan Lea, Dipak Kalra
INTRODUCTION: The aim of the paper is to establish the requirements and methodology for the development process of GreyMatters, a memory clinic system, outlining the conceptual, practical, technical and ethical challenges, and the experiences of capturing clinical and research oriented data along with the implementation of the system. METHODS: The methodology for development of the information system involved phases of requirements gathering, modeling and prototype creation, and 'bench testing' the prototype with experts...
2017: Studies in Health Technology and Informatics
https://www.readbyqxmd.com/read/28419019/complexities-of-consent-ethics-in-the-pediatric-emergency-department
#3
Naomi Dreisinger, Nathan Zapolsky
Informed consent is a communicative process of sharing information with patients, which helps assure their understanding of the information provided and asks for their permission to proceed. Informed consent allows a patient or a patient's family to use his or her own value system to determine the need for a particular procedure or test. Asking a patient for permission to treat requires the provider to respect the patient's autonomy through allowing him or her to be an active part of the decision-making process...
April 18, 2017: Pediatric Emergency Care
https://www.readbyqxmd.com/read/28415857/sharing-data-to-build-a-medical-information-commons-from-bermuda-to-the-global-alliance
#4
Robert Cook-Deegan, Rachel A Ankeny, Kathryn Maxson Jones
The Human Genome Project modeled its open science ethos on nematode biology, most famously through daily release of DNA sequence data based on the 1996 Bermuda Principles. That open science philosophy persists, but daily, unfettered release of data has had to adapt to constraints occasioned by the use of data from individual people, broader use of data not only by scientists but also by clinicians and individuals, the global reach of genomic applications and diverse national privacy and research ethics laws, and the rising prominence of a diverse commercial genomics sector...
April 17, 2017: Annual Review of Genomics and Human Genetics
https://www.readbyqxmd.com/read/28385682/ethics-and-privacy-implications-of-using-the-internet-and-social-media-to-recruit-participants-for-health-research-a-privacy-by-design-framework-for-online-recruitment
#5
Jacqueline Lorene Bender, Alaina B Cyr, Luk Arbuckle, Lorraine E Ferris
BACKGROUND: The Internet and social media offer promising ways to improve the reach, efficiency, and effectiveness of recruitment efforts at a reasonable cost, but raise unique ethical dilemmas. We describe how we used social media to recruit cancer patients and family caregivers for a research study, the ethical issues we encountered, and the strategies we developed to address them. OBJECTIVE: Drawing on the principles of Privacy by Design (PbD), a globally recognized standard for privacy protection, we aimed to develop a PbD framework for online health research recruitment...
April 6, 2017: Journal of Medical Internet Research
https://www.readbyqxmd.com/read/28382416/engaging-a-state-facebook-comments-on-a-large-population-biobank
#6
Tevah Platt, Jodyn Platt, Daniel Thiel, Sharon L R Kardia
Scholarship on newborn screening, dried bloodspot retention, and large population biobanking call consistently for improved public engagement. Communication with participants likely occurs only in the context of collection, consent, or notification, if at all. We ran an 11-week advertising campaign to inform Michigan Facebook users unlikely to know that their or their children's dried bloodspots (DBSs) were stored in a state biobank. We investigated the pattern and content of comments posted during the campaign, focusing on users' questions, attitudes and concerns, and the role the moderator played in addressing them...
April 5, 2017: Journal of Community Genetics
https://www.readbyqxmd.com/read/28379834/ethical-considerations-in-electronic-monitoring-of-the-cognitively-impaired
#7
Y Tony Yang, Charles G Kels
Cognitive impairment afflicts an estimated 16 million people in the United States. Wandering is a concerning behavior associated with cognitive impairment, as it may threaten patient safety. The risks posed by wandering place severe burdens on both professional and informal caregivers, as well as law enforcement institutions throughout the United States. As such, location trackers that could reduce this burden have become increasingly prevalent. As with many assistive technologies, the substantial promise of location trackers is counterbalanced by potential pitfalls with respect to loss of privacy and autonomy...
March 2017: Journal of the American Board of Family Medicine: JABFM
https://www.readbyqxmd.com/read/28376811/smart-homes-private-homes-an-empirical-study-of-technology-researchers-perceptions-of-ethical-issues-in-developing-smart-home-health-technologies
#8
Giles Birchley, Richard Huxtable, Madeleine Murtagh, Ruud Ter Meulen, Peter Flach, Rachael Gooberman-Hill
BACKGROUND: Smart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology's potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves...
April 4, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28375760/ethical-legal-and-social-issues-of-biobanking-past-present-and-future
#9
REVIEW
Marianna J Bledsoe
The past 15 years has seen considerable changes in the research environment. These changes include the development of new sophisticated genetic and genomic technologies, a proliferation of databases containing large amount of genotypic and phenotypic data, and wide-spread data sharing among many institutions, nationally and internationally. These changes have raised new questions regarding how best to protect the participants of biobanking research. In response to these questions, best practices for addressing the legal, ethical, and social issues of biobanking have been developed...
April 2017: Biopreservation and Biobanking
https://www.readbyqxmd.com/read/28363928/atraumatic-versus-traumatic-lumbar-puncture-needles-a-systematic-review-and-meta-analysis-protocol
#10
Siddharth Nath, Jetan H Badhiwala, Waleed Alhazzani, Farshad Nassiri, Emilie Belley-Cote, Alex Koziarz, Ashkan Shoamanesh, Laura Banfield, Wieslaw Oczkowski, Mike Sharma, Demetrios Sahlas, Kesava Reddy, Forough Farrokhyar, Sheila Singh, Sunjay Sharma, Nicole Zytaruk, Magdy Selim, Saleh A Almenawer
INTRODUCTION: Lumbar puncture is one of the oldest and most commonly performed procedures in medicine, used to diagnose and treat disease. Headache following lumbar puncture remains a frequent complication, causing significant patient discomfort and often requiring narcotic analgesia or invasive therapy. Needle tip design has been proposed to affect the incidence of headache postlumbar puncture, with pencil-point 'atraumatic' needles thought to reduce its incidence in comparison to bevelled 'traumatic' needles...
March 31, 2017: BMJ Open
https://www.readbyqxmd.com/read/28361731/health-information-technology-as-a-universal-donor-to-bioethics-education
#11
Kenneth W Goodman
Health information technology, sometimes called biomedical informatics, is the use of computers and networks in the health professions. This technology has become widespread, from electronic health records to decision support tools to patient access through personal health records. These computational and information-based tools have engendered their own ethics literature and now present an opportunity to shape the standard medical and nursing ethics curricula. It is suggested that each of four core components in the professional education of clinicians-privacy, end-of-life care, access to healthcare and valid consent, and clinician-patient communication-offers an opportunity to leverage health information technology for curricular improvement...
April 2017: Cambridge Quarterly of Healthcare Ethics: CQ: the International Journal of Healthcare Ethics Committees
https://www.readbyqxmd.com/read/28361730/safeguarding-confidentiality-in-electronic-health-records
#12
Akhil Shenoy, Jacob M Appel
Electronic health records (EHRs) offer significant advantages over paper charts, such as ease of portability, facilitated communication, and a decreased risk of medical errors; however, important ethical concerns related to patient confidentiality remain. Although legal protections have been implemented, in practice, EHRs may be still prone to breaches that threaten patient privacy. Potential safeguards are essential, and have been implemented especially in sensitive areas such as mental illness, substance abuse, and sexual health...
April 2017: Cambridge Quarterly of Healthcare Ethics: CQ: the International Journal of Healthcare Ethics Committees
https://www.readbyqxmd.com/read/28348183/smartphone-application-for-women-with-gestational-diabetes-mellitus-a-study-protocol-for-a-multicentre-randomised-controlled-trial
#13
Iren Borgen, Lisa Maria Garnweidner-Holme, Anne Flem Jacobsen, Kirsti Bjerkan, Seraj Fayyad, Pål Joranger, Anne Marie Lilleengen, Annhild Mosdøl, Josef Noll, Milada Cvancarova Småstuen, Laura Terragni, Liv Elin Torheim, Mirjam Lukasse
INTRODUCTION: The promotion of a healthy diet, physical activity and measurement of blood glucose levels are essential components in the care for women with gestational diabetes mellitus (GDM). Smartphones offer a new way to promote health behaviour. The main aim is to investigate if the use of the Pregnant+ app, in addition to standard care, results in better blood glucose levels compared with current standard care only, for women with GDM. METHODS AND ANALYSIS: This randomised controlled trial will include 230 pregnant women with GDM followed up at 5 outpatient departments (OPD) in the greater Oslo Region...
March 27, 2017: BMJ Open
https://www.readbyqxmd.com/read/28336804/beyond-privacy-and-exposure-ethical-issues-within-citizen-facing-analytics
#14
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
#15
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
#16
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
#17
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
#18
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
#19
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
#20
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
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