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ethics privacy

Ali K Yetisen
Biohacking is a do-it-yourself citizen science merging body modification with technology. The motivations of biohackers include cybernetic exploration, personal data acquisition, and advocating for privacy rights and open-source medicine. The emergence of a biohacking community has influenced discussions of cultural values, medical ethics, safety, and consent in transhumanist technology.
March 14, 2018: Trends in Biotechnology
Deanne Wong, Sebastian Morgan-Lynch
Patient portals enable people to access their health information electronically, but concerns about confidentiality and privacy breaches, particularly for young people, may be impeding portal adoption in New Zealand. This paper considers the legal and ethical framework relating to health information privacy and informed consent in New Zealand, and proposes an approach to implementing patient portals for young people. Shared portal access (where both a young person and their parent or guardian have access to the young person's portal) may be appropriate for young children whose parents or guardians are responsible for their health care...
December 2017: Journal of Primary Health Care
Deepa Singal, Chantalle Menard, Christine J Neilson, Marni Brownell, Ana Hanlon-Dearman, Albert Chudley, Ryan Zarychanski, Ahmed Abou-Setta
INTRODUCTION: The aim of this paper is to provide a protocol for a systematic review assessing the effectiveness of evidence from randomised controlled trials comparing fetal alcohol spectrum disorders pharmacological and non-pharmacological interventions with placebo/dummy interventions or usual standards of care in children and adolescents (<18 years old). METHODS AND ANALYSIS: The following electronic databases will be searched: Medline (Ovid), Cumulative Index of Nursing and Allied Health Plus with Full text (EBSCO), Cochrane Central Register of Controlled Trials (Cochrane Library-Wiley), PsycINFO (ProQuest) and Proquest DissertationsandTheses will be searched from inception to March 2017 for relevant citations of published trials using individualised search strategies prepared for database...
March 9, 2018: BMJ Open
Andrea Lavazza
There are many kinds of neural prostheses available or being researched today. In most cases they are intended to cure or improve the condition of patients affected by some cerebral deficiency. In other cases, their goal is to provide new means to maintain or improve an individual's normal performance. In all these circumstances, one of the possible risks is that of violating the privacy of brain contents (which partly coincide with mental contents) or of depriving individuals of full control over their thoughts (mental states), as the latter are at least partly detectable by new prosthetic technologies...
2018: Frontiers in Neuroscience
Erin Rothwell, Jeffrey R Botkin, Sydney Cheek-O'Donnell, Bob Wong, Gretchen A Case, Erin Johnson, Trent Matheson, Alena Wilson, Nicole R Robinson, Jared Rawlings, Brooke Horejsi, Ana Maria Lopez, Carrie L Byington
OBJECTIVE: This study assessed the short-term impact of the play "Informed Consent" by Deborah Zoe Laufer (a fictionalized look at the controversy over specimens collected from the Havasupai Tribe for diabetes research in 1989) on perceptions of trust, willingness to donate biospecimens, attitudes toward harm and privacy among the medical and undergraduate students, faculty and the public in the intermountain west. METHODS: Surveys were administered before and after a staged reading of the play by professional actors...
March 7, 2018: AJOB Empirical Bioethics
Pascal Borry, Timothy Caulfield, Xavier Estivill, Sigmund Loland, Michael McNamee, Bartha Maria Knoppers
Through the widespread availability of location-identifying devices, geolocalisation could potentially be used to place athletes during out-of-competition testing. In light of this debate, the WADA Ethics Panel formulated the following questions: (1) should WADA and/or other sponsors consider funding such geolocalisation research projects?, (2) if successful, could they be proposed to athletes as a complementary device to Anti-Doping Administration and Management System to help geolocalisation and reduce the risk of missed tests? and (3) should such devices be offered on a voluntary basis, or is it conceivable that they would be made mandatory for all athletes in registered testing pools? In this position paper, the WADA Ethics Panel concludes that the use of geolocalisation could be useful in a research setting with the goal of understanding associations between genotype, phenotype and environment; however, it recognises that the use of geolocalisation as part of or as replacement of whereabouts rules is replete with ethical concerns...
March 2, 2018: British Journal of Sports Medicine
David B Resnik, Kevin C Elliott
Researchers have used drones to track wildlife populations, monitor forest fires, map glaciers, and measure air pollution but have only begun to consider how to use these unmanned aerial vehicles to study human beings. The potential use of drones to study public gatherings or other human activities raises novel issues of privacy, confidentiality, and consent, which this article explores in depth. It argues that drone research could fall into several different categories: non-human subjects research (HSR), exempt HSR, or non-exempt HSR...
February 27, 2018: Science and Engineering Ethics
Koen Bruynseels, Filippo Santoni de Sio, Jeroen van den Hoven
Personalized medicine uses fine grained information on individual persons, to pinpoint deviations from the normal. 'Digital Twins' in engineering provide a conceptual framework to analyze these emerging data-driven health care practices, as well as their conceptual and ethical implications for therapy, preventative care and human enhancement. Digital Twins stand for a specific engineering paradigm, where individual physical artifacts are paired with digital models that dynamically reflects the status of those artifacts...
2018: Frontiers in Genetics
Frederic G Reamer
Integrated health care has come of age. What began modestly in the 1930s has evolved into a mature model of health care that is quickly becoming the standard of care. Social workers are now employed in a wide range of comprehensive integrated health care organizations. Some of these settings were designed as integrated health care delivery systems from their beginning. Others evolved over time, some incorporating behavioral health into existing primary care centers and others incorporating primary care into existing behavioral health agencies...
February 22, 2018: Health & Social Work
Stefanie March, Manfred Antoni, Joachim Kieschke, Bianca Kollhorst, Birga Maier, Gabriele Müller, Murat Sariyar, Mandy Schulz, Swart Enno, Jan Zeidler, Falk Hoffmann
In recent years, linking different data sources, also called data linkage or record linkage, to address scientific questions, is being increasingly used in Germany. However, there are very few published reports and new projects develop the necessary tools independently of each other. Therefore, a team of researchers joined together to exchange their experiences on data linkage and to give suggestions on how linkage could be done for scientists, reviewers as well as members of data privacy boards and ethics committees...
February 20, 2018: Das Gesundheitswesen
Janique Fortier, Mariette Chartier, Sarah Turner, Nora Murdock, Frank Turner, Jitender Sareen, Tracie O Afifi, Laurence Y Katz, Marni Brownell, James Bolton, Brenda Elias, Corinne Isaak, Roberta Woodgate, Depeng Jiang
INTRODUCTION: High rates of mental health problems, such as suicidal behaviours, among First Nations youth in Canada are a major public health concern. The Good Behavior Game (GBG) is a school-based intervention that provides a nurturing environment for children and has been shown to promote positive outcomes. PAX Good Behavior Game (PAX GBG) is an adaptation and enhancement of the GBG. While PAX GBG has been implemented in Indigenous communities, little research exists examining the cultural and contextual appropriateness and effectiveness of the intervention in First Nations communities...
February 15, 2018: BMJ Open
Jay M Brenner, Andrew L Aswegan, Laura E Vearrier, Jesse B Basford, Kenneth V Iserson
Ethical dilemmas can create moral distress in even the most experienced emergency physicians (EPs). Following reasonable and justified approaches can help alleviate such distress. The purpose of this article is to guide EPs providing Emergency Medical Services (EMS) direction to navigate through common ethical issues confronted in the prehospital delivery of care, including protecting privacy and confidentiality, decision-making capacity and refusal of treatment, withholding of treatment, and termination of resuscitation (TOR)...
February 14, 2018: Prehospital and Disaster Medicine
Stefanie Broes, Denis Lacombe, Michiel Verlinden, Isabelle Huys
The recent revolution in science and technology applied to medical research has left in its wake a trial of biomedical data and human samples; however, its opportunities remain largely unfulfilled due to a number of legal, ethical, financial, strategic, and technical barriers. Precision oncology has been at the vanguard to leverage this potential of "Big data" and samples into meaningful solutions for patients, considering the need for new drug development approaches in this area (due to high costs, late-stage failures, and the molecular diversity of cancer)...
2018: Frontiers in Medicine
Amanda Nikolic, Nilmini Wickramasinghe, Damian Claydon-Platt, Vikram Balakrishnan, Philip Smart
BACKGROUND: The use of communication apps on mobile phones offers an efficient, unobtrusive, and portable mode of communication for medical staff. The potential enhancements in patient care and education appear significant, with clinical details able to be shared quickly within multidisciplinary teams, supporting rapid integration of disparate information, and more efficient patient care. However, sharing patient data in this way also raises legal and ethical issues. No data is currently available demonstrating how widespread the use of these apps are, doctor's attitudes towards them, or what guides clinician choice of app...
February 9, 2018: JMIR Medical Informatics
Sarah C Nelson, Stephanie M Fullerton
Patients and health care consumers can obtain access to their "raw," or uninterpreted, genetic data from direct-to-consumer genetic testing companies, researchers, or providers and pursue self-directed analysis via third-party interpretation tools. Yet relatively little is known about the nature of currently available interpretation tools or the motivations of tool developers. We conducted a structured content analysis of 23 third-party interpretation tool websites and supporting information, tracking features such as types of information returned, modes of generating and presenting that information, and privacy and security measures...
February 7, 2018: Journal of Genetic Counseling
Patricia Balthazar, Peter Harri, Adam Prater, Nabile M Safdar
The Hippocratic oath and the Belmont report articulate foundational principles for how physicians interact with patients and research subjects. The increasing use of big data and artificial intelligence techniques demands a re-examination of these principles in light of the potential issues surrounding privacy, confidentiality, data ownership, informed consent, epistemology, and inequities. Patients have strong opinions about these issues. Radiologists have a fiduciary responsibility to protect the interest of their patients...
February 2, 2018: Journal of the American College of Radiology: JACR
Malcolm K Smith, Michelle Taylor-Sands
The national ethical guidelines relevant to assisted reproductive technology (ART) have recently been reviewed by the National Health and Medical Research Council (NHMRC). The review process paid particular attention to the issue of non-medical sex selection, although ultimately, the updated ethical guidelines maintain the pre-consultation position of a prohibition on non-medical sex selection. Whilst this recent review process provided a public forum for debate and discussion of this ethically contentious issue, the Victorian case of JS and LS v Patient Review Panel (Health and Privacy) [2011] VCAT 856 provides a rare instance where the prohibition on non-medical sex selection has been explored by a court or tribunal in Australia...
February 2, 2018: Journal of Bioethical Inquiry
Jie Zhou, Yan Luo, Bu Yun Ma, Wen Wu Ling, Xiang Lan Zhu
RATIONALE: Co-occurrence of medullary thyroid carcinoma (MTC) and papillary thyroid carcinoma (PTC) in the same thyroid gland with liver metastasis is a rare condition. To our knowledge, the utility of contrast-enhanced ultrasound (CEUS) to diagnose it is much less. PATIENT CONCERNS: A 33-year-old female was referred to our hospital due to the increase in plasma calcitonin concentration and carcino-embryonic antigen 12 months after her total thyroidectomy. To find metastasis, she received laboratory tests, gray-scale US, and CEUS...
December 2017: Medicine (Baltimore)
Mark A Rothstein
The duty to warn genetically at-risk relatives of patients is one of the most misunderstood legal and ethical issues affecting clinical genetics. The legal doctrines are often associated with three state appellate court cases beginning in the mid-1990s. Since the HIPAA Privacy Rule went into effect in 2003, the duty to warn must be accomplished by warning the patient of the genetic nature of a diagnosed disorder or genetic risk and the necessity of warning at-risk relatives. Health-care providers are neither required nor permitted to warn at-risk relatives without the consent of their patients...
February 1, 2018: Genetics in Medicine: Official Journal of the American College of Medical Genetics
Eleanor Bantry-White
Walking outdoors supports health and well-being but some people living with dementia are at increased risk of getting lost and of harm while missing. Electronic monitoring can potentially play an important preventative role by enabling the person's location to be continuously monitored by caregivers. However, there are considerable ethical concerns arising from electronic monitoring. This paper explores these thematically, drawing attention to its implications for autonomy and liberty; privacy; dignity; the rights and needs of caregivers and families; beneficence and non-maleficence...
January 30, 2018: Journal of Gerontological Social Work
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