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https://www.readbyqxmd.com/read/27919384/health-information-professionals-in-a-global-ehealth-world-ethical-and-legal-arguments-for-the-international-certification-and-accreditation-of-health-information-professionals
#1
Eike-Henner W Kluge
BACKGROUND: Issues such as privacy, security, quality, etc. have received considerable attention in discussions of eHealth, mHealth and pHealth. However, comparatively little attention has been paid to the fact that these methods of delivering health care situate Health Information Professionals (HIPs) in an ethical context that is importantly different from that of traditional health care because they assign a fiduciary role to HIPs that they did not have before, their previous technical involvement notwithstanding...
January 2017: International Journal of Medical Informatics
https://www.readbyqxmd.com/read/27875647/what-pacemakers-can-teach-us-about-the-ethics-of-maintaining-artificial-organs
#2
Katrina Hutchison, Robert Sparrow
One day soon it may be possible to replace a failing heart, liver, or kidney with a long-lasting mechanical replacement or perhaps even with a 3-D printed version based on the patient's own tissue. Such artificial organs could make transplant waiting lists and immunosuppression a thing of the past. Supposing that this happens, what will the ongoing care of people with these implants involve? In particular, how will the need to maintain the functioning of artificial organs over an extended period affect patients and their doctors and the responsibilities of those who manufacture such devices? Drawing on lessons from the history of the cardiac pacemaker, this article offers an initial survey of the ethical issues posed by the need to maintain and service artificial organs...
November 2016: Hastings Center Report
https://www.readbyqxmd.com/read/27854532/twitter-as-a-tool-for-health-research-a-systematic-review
#3
Lauren Sinnenberg, Alison M Buttenheim, Kevin Padrez, Christina Mancheno, Lyle Ungar, Raina M Merchant
BACKGROUND: Researchers have used traditional databases to study public health for decades. Less is known about the use of social media data sources, such as Twitter, for this purpose. OBJECTIVES: To systematically review the use of Twitter in health research, define a taxonomy to describe Twitter use, and characterize the current state of Twitter in health research. SEARCH METHODS: We performed a literature search in PubMed, Embase, Web of Science, Google Scholar, and CINAHL through September 2015...
November 17, 2016: American Journal of Public Health
https://www.readbyqxmd.com/read/27842524/introduction-to-the-article-collection-translation-in-healthcare-ethical-legal-and-social-implications
#4
EDITORIAL
Michael Morrison, Donna Dickenson, Sandra Soo-Jin Lee
New technologies are transforming and reconfiguring the boundaries between patients, research participants and consumers, between research and clinical practice, and between public and private domains. From personalised medicine to big data and social media, these platforms facilitate new kinds of interactions, challenge longstanding understandings of privacy and consent, and raise fundamental questions about how the translational patient pathway should be organised.This editorial introduces the cross-journal article collection "Translation in healthcare: ethical, legal, and social implications", briefly outlining the genesis of the collection in the 2015 Translation in healthcare conference in Oxford, UK and providing an introduction to the contemporary ethical challenges of translational research in biology and medicine accompanied by a summary of the papers included in this collection...
November 14, 2016: BMC Medical Ethics
https://www.readbyqxmd.com/read/27830254/clinical-research-informatics-contributions-from-2015
#5
C Daniel, R Choquet
OBJECTIVES: To summarize key contributions to current research in the field of Clinical Research Informatics (CRI) and to select best papers published in 2015. METHOD: A bibliographic search using a combination of MeSH and free terms search over PubMed on Clinical Research Informatics (CRI) was performed followed by a double-blind review in order to select a list of candidate best papers to be then peer-reviewed by external reviewers. A consensus meeting between the two section editors and the editorial team was finally organized to conclude on the selection of best papers...
November 10, 2016: Yearbook of Medical Informatics
https://www.readbyqxmd.com/read/27830250/all-that-glitters-is-not-gold-consumer-health-informatics-and-education-in-the-era-of-social-media-and-health-apps-findings-from-the-yearbook-2016-section-on-consumer-health-informatics
#6
L Fernandez-Luque, P Staccini
OBJECTIVE: To summarize the state of the art published during the year 2015 in the areas related to consumer health informatics and education with a special emphasis on unintended consequences of applying mobile and social media technologies in that domain. METHODS: We conducted a systematic review of articles published in PubMed with a predefined set of queries, which lead to the selection of over 700 potential relevant articles. Section editors screened those papers on the title, abstract, and finally complete paper basis, taking into account the papers' relevance for the section topic...
November 10, 2016: Yearbook of Medical Informatics
https://www.readbyqxmd.com/read/27830242/building-a-privacy-ethics-and-data-access-framework-for-real-world-computerised-medical-record-system-data-a-delphi-study-contribution-of-the-primary-health-care-informatics-working-group
#7
H Liyanage, S-T Liaw, C T Di Iorio, C Kuziemsky, R Schreiber, A L Terry, S de Lusignan
BACKGROUND: Privacy, ethics, and data access issues pose significant challenges to the timely delivery of health research. Whilst the fundamental drivers to ensure that data access is ethical and satisfies privacy requirements are similar, they are often dealt with in varying ways by different approval processes. OBJECTIVE: To achieve a consensus across an international panel of health care and informatics professionals on an integrated set of privacy and ethics principles that could accelerate health data access in data-driven health research projects...
November 10, 2016: Yearbook of Medical Informatics
https://www.readbyqxmd.com/read/27830230/the-unintended-consequences-of-social-media-in-healthcare-new-problems-and-new-solutions
#8
S Hors-Fraile, S Atique, M A Mayer, K Denecke, M Merolli, M Househ
OBJECTIVES: Social media is increasingly being used in conjunction with health information technology (health IT). The objective of this paper is to identify some of the undesirable outcomes that arise from this integration and to suggest solutions to these problems. METHODOLOGY: After a discussion with experts to elicit the topics that should be included in the survey, we performed a narrative review based on recent literature and interviewed multidisciplinary experts from different areas...
November 10, 2016: Yearbook of Medical Informatics
https://www.readbyqxmd.com/read/27788767/practice-paper-of-the-academy-of-nutrition-and-dietetics-social-media-and-the-dietetics-practitioner-opportunities-challenges-and-best-practices
#9
Janet Helm, Regan Miller Jones
Social media tools, including blogs, social networks, and media-sharing sites, help nutrition and dietetics practitioners reach broader audiences and connect directly with the public. In many ways, social media has transformed the practice of dietetics and has opened up new avenues for communicating food and nutrition information. Social media has been an effective tool for virtual nutrition counseling, patient education, peer-to-peer support, and public health campaigns. Increasingly, nutrition and dietetics practitioners are using social media to network and collaborate with colleagues, conduct a job search, stay current with new research, champion a cause, promote products or services, and build a business...
November 2016: Journal of the Academy of Nutrition and Dietetics
https://www.readbyqxmd.com/read/27761849/a-relational-approach-to-genetic-counseling-for-hereditary-breast-and-ovarian-cancer
#10
Rowan Forbes Shepherd, Tamara Kayali Browne, Linda Warwick
Ethical issues arise for genetic counselors when a client fails to disclose a genetic diagnosis of hereditary disease to family: they must consider the rights of the individual client to privacy and confidentiality as well as the rights of the family to know their genetic risk. Although considerable work has addressed issues of non-disclosure from the client's perspective, there is a lack of qualitative research into how genetic counselors address this issue in practice. In this study, a qualitative approach was taken to investigate whether genetic counselors in Australia use a relational approach to encourage the disclosure of genetic information from hereditary breast and ovarian cancer (HBOC) clients among family members; and if so, how they use it...
October 19, 2016: Journal of Genetic Counseling
https://www.readbyqxmd.com/read/27755563/the-adoption-of-cloud-computing-in-the-field-of-genomics-research-the-influence-of-ethical-and-legal-issues
#11
Kathleen Charlebois, Nicole Palmour, Bartha Maria Knoppers
This study aims to understand the influence of the ethical and legal issues on cloud computing adoption in the field of genomics research. To do so, we adapted Diffusion of Innovation (DoI) theory to enable understanding of how key stakeholders manage the various ethical and legal issues they encounter when adopting cloud computing. Twenty semi-structured interviews were conducted with genomics researchers, patient advocates and cloud service providers. Thematic analysis generated five major themes: 1) Getting comfortable with cloud computing; 2) Weighing the advantages and the risks of cloud computing; 3) Reconciling cloud computing with data privacy; 4) Maintaining trust and 5) Anticipating the cloud by creating the conditions for cloud adoption...
2016: PloS One
https://www.readbyqxmd.com/read/27754161/pl-03-2-remote-blood-pressure-monitoring-in-hypertension-care-practice-of-hypertension-by-teletransmission-of-home-blood-pressure
#12
Yutaka Imai
It has been confirmed that clinical significance of home blood pressure measurements (HBPM) is higher than clinic BP measurements and ambulatory BP monitoring. However, several drawbacks of HBPM have also been mentioned, e.g. selection and reporting biases, difficulties of calculation of multiple measurements, difficulties of onsite judgement of numerous recordings, etc. Recent devices for HBPM incorporate memory function. This function can overcome such drawbacks of HBPM. These memorized data can transmit, storage, retrieve, be arithmetic and control, be judged based on algorithm and be got feedback...
September 2016: Journal of Hypertension
https://www.readbyqxmd.com/read/27751180/legal-assessment-tool-lat-an-interactive-tool-to-address-privacy-and-data-protection-issues-for-data-sharing
#13
Wolfgang Kuchinke, Christian Krauth, René Bergmann, Töresin Karakoyun, Astrid Woollard, Irene Schluender, Benjamin Braasch, Martin Eckert, Christian Ohmann
BACKGROUND: In an unprecedented rate data in the life sciences is generated and stored in many different databases. An ever increasing part of this data is human health data and therefore falls under data protected by legal regulations. As part of the BioMedBridges project, which created infrastructures that connect more than 10 ESFRI research infrastructures (RI), the legal and ethical prerequisites of data sharing were examined employing a novel and pragmatic approach. METHODS: We employed concepts from computer science to create legal requirement clusters that enable legal interoperability between databases for the areas of data protection, data security, Intellectual Property (IP) and security of biosample data...
July 7, 2016: BMC Medical Informatics and Decision Making
https://www.readbyqxmd.com/read/27737819/-i-always-vet-things-navigating-privacy-and-the-presentation-of-self-on-health-discussion-boards-among-individuals-with-long-term-conditions
#14
Ellen Brady, Julia Segar, Caroline Sanders
BACKGROUND: The ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members. OBJECTIVE: There has been very little research regarding how privacy is experienced and enacted online...
October 13, 2016: Journal of Medical Internet Research
https://www.readbyqxmd.com/read/27729053/ethical-issues-in-microbiome-research-and-medicine
#15
Rosamond Rhodes
The human microbiome is the collection of bacteria, viruses, and fungi that live on and in the human organism's skin, mucosa, and intestinal tract. Re-examining commonly accepted ethical standards from the perspective of this new area of research provides an opportunity to reassess our current thinking about research regulations as well as the importance of some principles and distinctions. In this commentary, I explain ethical issues illuminated by research on the human microbiome related to personal identity, privacy, property, research ethics, public health, and biobanks...
October 12, 2016: BMC Medicine
https://www.readbyqxmd.com/read/27702792/how-can-hospitals-better-protect-the-privacy-of-electronic-medical-records-perspectives-from-staff-members-of-health-information-management-departments
#16
Ming-Ling Sher, Paul C Talley, Tain-Junn Cheng, Kuang-Ming Kuo
PURPOSE: The adoption of electronic medical records (EMR) is expected to better improve overall healthcare quality and to offset the financial pressure of excessive administrative burden. However, safeguarding EMR against potentially hostile security breaches from both inside and outside healthcare facilities has created increased patients' privacy concerns from all sides. The aim of our study was to examine the influencing factors of privacy protection for EMR by healthcare professionals...
October 4, 2016: HIM Journal
https://www.readbyqxmd.com/read/27695660/psychiatric-genetics-in-child-custody-proceedings-ethical-legal-and-social-issues
#17
Maya Sabatello, S Appelbaum
This paper considers the ethical, legal, and social issues raised by the prospect of increasing use of psychiatric genetic data in child custody litigation. Although genetic tests cannot currently confirm a parent or child's psychiatric diagnosis, it is likely that as relevant findings emerge, they will be introduced in family courts to challenge parental capacity. Here, we draw on three projected, but plausible, scenarios for obtaining psychiatric data about parents -- imposed genetic testing, access to medical records, and genetic theft -- then consider the use of psychiatric genetic data of children, to highlight the issues that judges, child custody evaluators, and clinicians who may provide treatment for parents or children with mental health issues will need to consider...
September 2016: Current Genetic Medicine Reports
https://www.readbyqxmd.com/read/27694670/adoption-of-electronic-personal-health-records-in-canada-perceptions-of-stakeholders
#18
Marie-Pierre Gagnon, Julie Payne-Gagnon, Erik Breton, Jean-Paul Fortin, Lara Khoury, Lisa Dolovich, David Price, David Wiljer, Gillian Bartlett, Norman Archer
BACKGROUND: Healthcare stakeholders have a great interest in the adoption and use of electronic personal health records (ePHRs) because of the potential benefits associated with them. Little is known, however, about the level of adoption of ePHRs in Canada and there is limited evidence concerning their benefits and implications for the healthcare system. This study aimed to describe the current situation of ePHRs in Canada and explore stakeholder perceptions regarding barriers and facilitators to their adoption...
April 6, 2016: International Journal of Health Policy and Management
https://www.readbyqxmd.com/read/27688250/engaging-research-participants-to-inform-the-ethical-conduct-of-mobile-imaging-pervasive-sensing-and-location-tracking-research
#19
Camille Nebeker, Tiffany Lagare, Michelle Takemoto, Brittany Lewars, Katie Crist, Cinnamon S Bloss, Jacqueline Kerr
Researchers utilize mobile imaging, pervasive sensing, social media, and location tracking (MISST) technologies to observe and intervene with participants in their natural environment. The use of MISST methods and tools introduces unique ethical issues due to the type and quantity of data, and produces raising new challenges around informed consent, risk assessment, and data management. Since MISST methods are relatively new in behavioral research, there is little documented evidence to guide institutional review board (IRB) risk assessment and inform appropriate risk management strategies...
December 2016: Translational Behavioral Medicine
https://www.readbyqxmd.com/read/27681358/genome-privacy-challenges-technical-approaches-to-mitigate-risk-and-ethical-considerations-in-the-united-states
#20
Shuang Wang, Xiaoqian Jiang, Siddharth Singh, Rebecca Marmor, Luca Bonomi, Dov Fox, Michelle Dow, Lucila Ohno-Machado
Accessing and integrating human genomic data with phenotypes are important for biomedical research. Making genomic data accessible for research purposes, however, must be handled carefully to avoid leakage of sensitive individual information to unauthorized parties and improper use of data. In this article, we focus on data sharing within the scope of data accessibility for research. Current common practices to gain biomedical data access are strictly rule based, without a clear and quantitative measurement of the risk of privacy breaches...
September 28, 2016: Annals of the New York Academy of Sciences
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