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https://www.readbyqxmd.com/read/28095759/living-with-end-stage-renal-disease
#1
Karen Schipper, Elleke Landeweer, Tineke A Abma
BACKGROUND: Living with a renal disease often reduces quality of life because of the stress it entails. No attention has been paid to the moral challenges of living with renal disease. OBJECTIVES: To explore the moral challenges of living with a renal disease. RESEARCH DESIGN: A case study based on qualitative research. We used Walker's ethical framework combined with narrative ethics to analyse how negotiating care responsibilities lead to a new perspective on moral issues...
January 1, 2017: Nursing Ethics
https://www.readbyqxmd.com/read/28077127/navigating-social-and-ethical-challenges-of-biobanking-for-human-microbiome-research
#2
Kim H Chuong, David M Hwang, D Elizabeth Tullis, Valerie J Waters, Yvonne C W Yau, David S Guttman, Kieran C O'Doherty
BACKGROUND: Biobanks are considered to be key infrastructures for research development and have generated a lot of debate about their ethical, legal and social implications (ELSI). While the focus has been on human genomic research, rapid advances in human microbiome research further complicate the debate. DISCUSSION: We draw on two cystic fibrosis biobanks in Toronto, Canada, to illustrate our points. The biobanks have been established to facilitate sample and data sharing for research into the link between disease progression and microbial dynamics in the lungs of pediatric and adult patients...
January 11, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28032365/the-human-genome-as-public-justifications-and-implications
#3
Michelle J Bayefsky
Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome - its common nature - has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature of the genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing...
December 28, 2016: Bioethics
https://www.readbyqxmd.com/read/28029405/distributed-learning-developing-a-predictive-model-based-on-data-from-multiple-hospitals-without-data-leaving-the-hospital-a-real-life-proof-of-concept
#4
Arthur Jochems, Timo M Deist, Johan van Soest, Michael Eble, Paul Bulens, Philippe Coucke, Wim Dries, Philippe Lambin, Andre Dekker
PURPOSE: One of the major hurdles in enabling personalized medicine is obtaining sufficient patient data to feed into predictive models. Combining data originating from multiple hospitals is difficult because of ethical, legal, political, and administrative barriers associated with data sharing. In order to avoid these issues, a distributed learning approach can be used. Distributed learning is defined as learning from data without the data leaving the hospital. PATIENTS AND METHODS: Clinical data from 287 lung cancer patients, treated with curative intent with chemoradiation (CRT) or radiotherapy (RT) alone were collected from and stored in 5 different medical institutes (123 patients at MAASTRO (Netherlands, Dutch), 24 at Jessa (Belgium, Dutch), 34 at Liege (Belgium, Dutch and French), 48 at Aachen (Germany, German) and 58 at Eindhoven (Netherlands, Dutch))...
October 28, 2016: Radiotherapy and Oncology: Journal of the European Society for Therapeutic Radiology and Oncology
https://www.readbyqxmd.com/read/28027690/limitation-of-therapeutic-effort-experienced-by-intensive-care-nurses
#5
Juan Francisco Velarde-García, Raquel Luengo-González, Raquel González-Hervías, César Cardenete-Reyes, Beatriz Álvarez-Embarba, Domingo Palacios-Ceña
BACKGROUND: Nurses who practice limitation of therapeutic effort become fully involved in emotionally charged situations, which can affect them significantly on an emotional and professional level. OBJECTIVES: To describe the experience of intensive care nurses practicing limitation of therapeutic effort. METHOD: A qualitative, phenomenological study was performed within the intensive care units of the Madrid Hospitals Health Service. Purposeful and snowball sampling methods were used, and data collection methods included semi-structured and unstructured interviews, researcher field notes, and participants' personal letters...
January 1, 2016: Nursing Ethics
https://www.readbyqxmd.com/read/27999543/opportunities-and-challenges-for-drug-development-public-private-partnerships-adaptive-designs-and-big-data
#6
REVIEW
Oktay Yildirim, Matthias Gottwald, Peter Schüler, Martin C Michel
Drug development faces the double challenge of increasing costs and increasing pressure on pricing. To avoid that lack of perceived commercial perspective will leave existing medical needs unmet, pharmaceutical companies and many other stakeholders are discussing ways to improve the efficiency of drug Research and Development. Based on an international symposium organized by the Medical School of the University of Duisburg-Essen (Germany) and held in January 2016, we discuss the opportunities and challenges of three specific areas, i...
2016: Frontiers in Pharmacology
https://www.readbyqxmd.com/read/27996918/tracking-u-s-professional-athletes-the-ethics-of-biometric-technologies
#7
Katrina Karkazis, Jennifer R Fishman
Professional sport in the United States has widely adopted biometric technologies, dramatically expanding the monitoring of players' biodata. These technologies have the potential to prevent injuries, improve performance, and extend athletes' careers; they also risk compromising players' privacy and autonomy, the confidentiality of their data, and their careers. The use of these technologies in professional sport and the consumer sector remains largely unregulated and unexamined. We seek to provide guidance for their adoption by examining five areas of concern: (1) validity and interpretation of data; (2) increased surveillance and threats to privacy; (3) risks to confidentiality and concerns regarding data security; (4) conflicts of interest; and (5) coercion...
January 2017: American Journal of Bioethics: AJOB
https://www.readbyqxmd.com/read/27995447/ethics-nanobiosensors-and-elite-sport-the-need-for-a-new-governance-framework
#8
Robert Evans, Michael McNamee, Owen Guy
Individual athletes, coaches and sports teams seek continuously for ways to improve performance and accomplishment in elite competition. New techniques of performance analysis are a crucial part of the drive for athletic perfection. This paper discusses the ethical importance of one aspect of the future potential of performance analysis in sport, combining the field of biomedicine, sports engineering and nanotechnology in the form of 'Nanobiosensors'. This innovative technology has the potential to revolutionise sport, enabling real time biological data to be collected from athletes that can be electronically distributed...
December 19, 2016: Science and Engineering Ethics
https://www.readbyqxmd.com/read/27990475/evolving-data-access-policy-the-canadian-context
#9
Stephanie O M Dyke, Katie M Saulnier, Tomi Pastinen, Guillaume Bourque, Yann Joly
In setting up a data access policy to share controlled access data from the McGill Epigenomics Mapping Centre (EMC), an International Human Epigenome Consortium (IHEC) partner project, we encountered ethical and legal challenges that are likely to be relevant to other researchers sharing data, especially from Canadian projects. We discuss our solutions to the following data-sharing challenges, based on comparative legal and policy analysis: (1) providing access to data to a growing number of researchers; (2) maintaining Canadian privacy standards while sharing controlled access data internationally; (3) freedom of information requests; and (4) providing more incentives for researchers to share pre-publication data...
September 15, 2016: Facets (Ott)
https://www.readbyqxmd.com/read/27990299/sharing-health-related-data-a-privacy-test
#10
Stephanie Om Dyke, Edward S Dove, Bartha M Knoppers
Greater sharing of potentially sensitive data raises important ethical, legal and social issues (ELSI), which risk hindering and even preventing useful data sharing if not properly addressed. One such important issue is respecting the privacy-related interests of individuals whose data are used in genomic research and clinical care. As part of the Global Alliance for Genomics and Health (GA4GH), we examined the ELSI status of health-related data that are typically considered 'sensitive' in international policy and data protection laws...
August 17, 2016: NPJ Genomic Medicine
https://www.readbyqxmd.com/read/27957310/evaluation-of-patients-rights-observance-according-to-patients-rights-charter-in-educational-hospitals-affiliated-to-mashhad-university-of-medical-sciences-medical-staffs-views
#11
Alireza Sabzevari, Mohammad Ali Kiani, Masumeh Saeidi, Seyed Ali Jafari, Hamidreza Kianifar, Hamid Ahanchian, Lida Jarahi, Mohsen Zakerian
INTRODUCTION: To supply quality services and healthcare, it is evident that medical ethics and patients' rights, while providing medical and healthcare services need to be observed. This study was conducted to evaluate observance of the Patients' Rights Charter among medical staff of educational hospitals affiliated to Mashhad University of Medical Sciences. METHODS: This cross-sectional study was conducted in four educational hospitals in Mashhad on eighty physicians, nurses, nurse aids and medical students...
October 2016: Electronic Physician
https://www.readbyqxmd.com/read/27933425/ethical-issues-in-using-social-media-to-deliver-an-hiv-prevention-intervention-results-from-the-hope-peru-study
#12
Renee Garett, Luis Menacho, Sean D Young
Social media technologies have become increasingly useful tools for research-based interventions. However, participants and social media users have expressed ethical concerns with these studies, such as risks and benefits of participation, as well as privacy, confidentiality, and informed consent issues. This study was designed to follow up with and assess experiences and perceptions of ethics-related issues among a sample of 211 men who have sex with men who participated in the Harnessing Online Peer Education (HOPE) Peru study, a randomized controlled HIV prevention intervention conducted in Peru...
February 2017: Prevention Science: the Official Journal of the Society for Prevention Research
https://www.readbyqxmd.com/read/27929525/the-precision-medicine-initiative-s-all-of-us-research-program-an-agenda-for-research-on-its-ethical-legal-and-social-issues
#13
REVIEW
Pamela L Sankar, Lisa S Parker
The Precision Medicine Initiative (PMI) is an innovative approach to developing a new model of health care that takes into account individual differences in people's genes, environments, and lifestyles. A cornerstone of the initiative is the PMI All of Us Research Program (formerly known as PMI-Cohort Program) which will create a cohort of 1 million volunteers who will contribute their health data and biospecimens to a centralized national database to support precision medicine research. The PMI All of US Research Program is the largest longitudinal study in the history of the United States...
December 8, 2016: Genetics in Medicine: Official Journal of the American College of Medical Genetics
https://www.readbyqxmd.com/read/27927667/life-after-prostate-cancer-diagnosis-protocol-for-a-uk-wide-patient-reported-outcomes-study
#14
Amy Downing, Penny Wright, Richard Wagland, Eila Watson, Therese Kearney, Rebecca Mottram, Majorie Allen, Victoria Cairnduff, Oonagh McSorley, Hugh Butcher, Luke Hounsome, Conan Donnelly, Peter Selby, Paul Kind, William Cross, James W H Catto, Dyfed Huws, David H Brewster, Emma McNair, Lauren Matheson, Carol Rivas, Johana Nayoan, Mike Horton, Jessica Corner, Julia Verne, Anna Gavin, Adam W Glaser
BACKGROUND: Prostate cancer and its treatment may impact physically, psychologically and socially; affecting the health-related quality of life of men and their partners/spouses. The Life After Prostate Cancer Diagnosis (LAPCD) study is a UK-wide patient-reported outcomes study which will generate information to improve the health and well-being of men with prostate cancer. METHODS AND ANALYSIS: Postal surveys will be sent to prostate cancer survivors (18-42 months postdiagnosis) in all 4 UK countries (n=∼70 000)...
December 7, 2016: BMJ Open
https://www.readbyqxmd.com/read/27925832/twitter-as-a-tool-for-health-research-a-systematic-review
#15
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...
January 2017: American Journal of Public Health
https://www.readbyqxmd.com/read/27925381/doctors-use-of-mobile-devices-in-the-clinical-setting-a-mixed-methods-study
#16
Arany Nerminathan, Amanda Harrison, Megan Phelps, Karen M Scott
AIM: To explore how doctors use mobile devices in the clinical setting and understand drivers for use. METHODS: A mixed methods study was used with doctors in a paediatric and adult teaching hospital in 2013. A paper based survey examined mobile device usage data by doctors in the clinical setting. Focus groups explored doctors' reasons for using or refraining from using mobile devices in the clinical setting, and their attitudes about others' use. RESULTS: The survey, completed by 109 doctors, showed that 91% owned a smartphone and 88% used their mobile devices frequently in the clinical setting...
December 7, 2016: Internal Medicine Journal
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
#17
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
#18
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
#19
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...
January 2017: American Journal of Public Health
https://www.readbyqxmd.com/read/27842524/introduction-to-the-article-collection-translation-in-healthcare-ethical-legal-and-social-implications
#20
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
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