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Informed consent and autonomy

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https://www.readbyqxmd.com/read/28526428/extensively-drug-resistant-bacteria-which-ethical-issues
#1
P Vassal, P Berthelot, J P Chaussinand, S Jay, J P de Filippis, C Auboyer, F Renoux, D Bedoin
OBJECTIVE: The increased bacterial resistance to antibiotics has now become a public health concern. How can we preserve the well-being of patients presenting with infections caused by extensively drug-resistant bacteria (EDRBs) and that of their contacts without inducing any loss of chance of survival, all the while living together and controlling the spread of these EDRBs? METHOD: Terre d'éthique, a French territorial ethics committee, was asked to reflect on this topic by the infection control unit of a French University Hospital as it raises many ethical issues...
May 16, 2017: Médecine et Maladies Infectieuses
https://www.readbyqxmd.com/read/28503832/the-voluntary-nature-of-decision-making-in-addiction-static-metaphysical-views-versus-epistemologically-dynamic-views
#2
Eric Racine, Simon Rousseau-Lesage
The degree of autonomy present in the choices made by individuals with an addiction, notably in the context of research, is unclear and debated. Some have argued that addiction, as it is commonly understood, prevents people from having sufficient decision-making capacity or self-control to engage in choices involving substances to which they have an addiction. Others have criticized this position for being too radical and have counter-argued in favour of the full autonomy of people with an addiction. Aligning ourselves with middle-ground positions between these two extremes, we flesh out an account of voluntary action that makes room for finer-grained analyses than the proposed all-or-nothing stances, which rely on a rather static metaphysical understanding of the nature of the voluntariness of action...
June 2017: Bioethics
https://www.readbyqxmd.com/read/28477297/engaging-rural-communities-in-genetic-research-challenges-and-opportunities
#3
Caress Dean, Amanda J Fogleman, Whitney E Zahnd, Alexander E Lipka, Ripan Singh Malhi, Kristin R Delfino, Wiley D Jenkins
Statistical analyses of health and disease in rural communities is frequently limited by low sample counts. Still, some studies indicate increased risk for some diseases even after adjustment for known risk factors. It has been hypothesized that the context of community formation in rural areas facilitates the propagation of genetic founder effects-potentially impacting disease susceptibility. However, outright examination of genetic diversity in such communities has not been performed. Our objective was to engage otherwise research-inexperienced rural communities of largely European descent in genomic research in the context of cancer susceptibility...
May 5, 2017: Journal of Community Genetics
https://www.readbyqxmd.com/read/28453700/a-need-to-simplify-informed-consent-documents-in-cancer-clinical-trials-a-position-paper-of-the-arcad-group
#4
H Bleiberg, G Decoster, A de Gramont, P Rougier, A Sobrero, A Benson, B Chibaudel, J Y Douillard, C Eng, C Fuchs, M Fujii, R Labianca, A K Larsen, E Mitchell, H J Schmoll, D Sprumont, J Zalcberg
Background: In respect of the principle of autonomy and the right of self-determination, obtaining an informed consent of potential participants before their inclusion in a study is a fundamental ethical obligation. The variations in national laws, regulations, and cultures contribute to complex informed consent documents for patients participating in clinical trials. Currently, only few ethics committees seem willing to address the complexity and the length of these documents and to request investigators and sponsors to revise them in a way to make them understandable for potential participants...
May 1, 2017: Annals of Oncology: Official Journal of the European Society for Medical Oncology
https://www.readbyqxmd.com/read/28452627/sexual-consent-capacity-ethical-issues-and-challenges-in-long-term-care
#5
Jennifer Hillman
More than two million Americans live in nursing homes and other long-term care facilities. Available research suggests that the majority of older nursing home residents, including those with some degree of cognitive impairment, place significant value upon a variety of sexual activities. With nearly half of all residents suffering from dementia, psychologists and other mental health professionals often face significant challenges in the assessment of their patients' sexual consent capacity. A primary ethical issue is to balance an individual resident's rights to autonomy and privacy with a facility's need to protect residents from harm...
January 2017: Clinical Gerontologist
https://www.readbyqxmd.com/read/28425315/caring-in-nursing-homes-to-promote-autonomy-and-participation
#6
Maria Hedman, Elisabeth Häggström, Anna-Greta Mamhidir, Ulrika Pöder
BACKGROUND: Autonomy and participation are threatened within the group of older people living in nursing homes. Evidence suggests that healthcare personnel act on behalf of older people but are still excluding them from decision-making in everyday care. OBJECTIVE: The purpose was to describe registered nurses' experience of caring for older people in nursing homes to promote autonomy and participation. RESEARCH DESIGN: A descriptive design with a phenomenological approach was used...
January 1, 2017: Nursing Ethics
https://www.readbyqxmd.com/read/28419019/complexities-of-consent-ethics-in-the-pediatric-emergency-department
#7
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/28405783/how-do-clinical-genetics-consent-forms-address-the-familial-approach-to-confidentiality-and-incidental-findings-a-mixed-methods-study
#8
Sandi Dheensa, Gillian Crawford, Claire Salter, Michael Parker, Angela Fenwick, Anneke Lucassen
Genetic test results can be relevant to patients and their relatives. Questions thus arise around whether clinicians regard genetic information as confidential to individuals or to families, and about how they broach this and other issues, including the potential for incidental findings, in consent (forms) for genetic testing. We conducted a content analysis of UK-wide genetic testing consent forms and interviewed 128 clinicians/laboratory scientists. We found that almost all genetic services offered patients multiple, sometimes unworkable, choices on forms, including an option to veto the use of familial genetic information to benefit relatives...
April 12, 2017: Familial Cancer
https://www.readbyqxmd.com/read/28398474/expect-the-unexpected-screening-for-secondary-findings-in-clinical-genomics-research
#9
Michael P Mackley, Benjamin Capps
Background: Due to decreasing cost, and increasing speed and precision, genomic sequencing in research is resulting in the generation of vast amounts of genetic data. The question of how to manage that information has been an area of significant debate. In particular, there has been much discussion around the issue of 'secondary findings' (SF)-findings unrelated to the research that have diagnostic significance. Sources of data: The following includes ethical commentaries, guidelines and policies in respect to large-scale clinical genomics studies...
April 7, 2017: British Medical Bulletin
https://www.readbyqxmd.com/read/28394963/-informed-consent-in-clinical-practice-persistent-doubts
#10
Miguel Kottow
Informed consent is the core aspect of the patient-physician relationship. Since its beginnings, clinical bioethics was opposed to the authoritarian paternalism characteristic of medicine since the 19th century. The informed consent was developed to provide patients with sufficient information to allow autonomous decisions when faced with medical diagnostic and therapeutic alternatives. In spite of bioethics’ effort to perfect informed consent, the discipline has been unable to avoid informed consent from becoming an impersonal and administrative procedure...
November 2016: Revista Médica de Chile
https://www.readbyqxmd.com/read/28394752/the-risks-of-opioid-treatment-perspectives-of-primary-care-practitioners-and-patients-from-safety-net-clinics
#11
Emily E Hurstak, Margot Kushel, Jamie Chang, Rachel Ceasar, Kara Zamora, Christine Miaskowski, Kelly Knight
BACKGROUND: Patients with a history of substance use are more likely than those without substance use to experience chronic noncancer pain (CNCP), to be prescribed opioids, and to experience opioid misuse or overdose. Primary care practitioners (PCPs) in safety-net settings care for low-income patients with CNCP and substance use, usually without specialist consultation. To inform communication related to opioid risk, we explored PCPs' and patients' perceptions of the risks of chronic opioid therapy...
April 2017: Substance Abuse
https://www.readbyqxmd.com/read/28377472/time-to-improve-informed-consent-for-dialysis-an-international-perspective
#12
Frank Brennan, Cameron Stewart, Hannah Burgess, Sara N Davison, Alvin H Moss, Fliss E M Murtagh, Michael Germain, Shelley Tranter, Mark Brown
The literature reveals that current nephrology practice in obtaining informed consent for dialysis falls short of ethical and legal requirements. Meeting these requirements represents a significant challenge, especially because the benefits and risks of dialysis have shifted significantly with the growing number of older, comorbid patients. The importance of informed consent for dialysis is heightened by several concerns, including: (1) the proportion of predialysis patients and patients on dialysis who lack capacity in decision making and (2) whether older, comorbid, and frail patients understand their poor prognosis and the full implications to their independence and functional status of being on dialysis...
April 4, 2017: Clinical Journal of the American Society of Nephrology: CJASN
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
#13
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/28336803/facilitating-the-ethical-use-of-health-data-for-the-benefit-of-society-electronic-health-records-consent-and-the-duty-of-easy-rescue
#14
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/28335031/ethics-of-health-policy-and-systems-research-a-scoping-review-of-the-literature
#15
Bridget Pratt, Amy Paul, Adnan A Hyder, Joseph Ali
Health policy and systems research (HPSR) is increasingly funded and undertaken as part of health system strengthening efforts worldwide. HPSR ethics is also a relatively new and emerging field, with numerous normative and descriptive questions that have largely not been considered. Normative questions include what ethical principles and values should guide HPSR. Descriptive questions include what ethical concerns arise when conducting HPSR. A small but growing body of scholarly work characterizes the various ethics issues inherent in HPSR...
March 15, 2017: Health Policy and Planning
https://www.readbyqxmd.com/read/28332936/ethical-concerns-about-emerging-treatment-paradigms-for-gender-dysphoria
#16
Stephen B Levine
The increasing incidence of requests for medical services to support gender transition for children, adolescents, and adults has consequences for society, governmental institutions, schools, families, health-care professionals, and, of course, patients. The sociological momentum to recognize and accommodate to trans phenomena has posed ethical dilemmas for endocrinologists, mental health professionals, and sexual specialists as they experience within themselves the clash between respect for patient autonomy, beneficence, nonmaleficence, and informed consent...
March 23, 2017: Journal of Sex & Marital Therapy
https://www.readbyqxmd.com/read/28317644/the-biomarker-based-diagnosis-of-alzheimer-s-disease-1-ethical-and-societal-issues
#17
REVIEW
Corinna Porteri, Emiliano Albanese, Charles Scerri, Maria C Carrillo, Heather M Snyder, Birgitta Martensson, Mark Baker, Ezio Giacobini, Marina Boccardi, Bengt Winblad, Giovanni B Frisoni, Samia Hurst
There is great interest in the use of biomarkers to assist in the timely identification of Alzheimer's disease (AD) in individuals with mild symptoms. However, the inclusion of AD biomarkers in clinical criteria poses socioethical challenges. The Geneva Task Force for the Roadmap of Alzheimer's Biomarkers was established to deliver a systematic strategic research agenda (aka roadmap) to promote efficient and effective validation of AD biomarkers and to foster their uptake in clinical practice. In this article, we summarize the workshop discussion of the Geneva Task Force "ethical and societal issues" working group, which comprised bioethicists, clinicians, health economists, and representatives of those affected by AD...
April 2017: Neurobiology of Aging
https://www.readbyqxmd.com/read/28270841/conditions-for-autonomous-choice-a-qualitative-study-of-older-adults-experience-of-decision-making-in-tavr
#18
Elisabeth Skaar, Anette Hylen Ranhoff, Jan Erik Nordrehaug, Daniel E Forman, Margrethe Aase Schaufel
BACKGROUND: Patient autonomy is a leading principle in bioethics and a basis for shared decision making. This study explores conditions for an autonomous choice experienced by older adults who recently underwent trans-catheter aortic valve replacement (TAVR). METHODS: Qualitative study entailing semi-structured interviews of a purposive sample of ten older (range 73-89, median 83.5 years) adults after TAVR (median 23 days). The study setting was a cardiac department at a university hospital performing TAVR since 2010...
January 2017: Journal of Geriatric Cardiology: JGC
https://www.readbyqxmd.com/read/28245820/unconventional-combinations-of-prospective-parents-ethical-challenges-faced-by-ivf-providers
#19
Robert Klitzman
BACKGROUND: Professional guidelines have addressed ethical dilemmas posed by a few types of nontraditional procreative arrangements (e.g., gamete donations between family members), but many questions arise regarding how providers view and make decisions about these and other such arrangements. METHODS: Thirty-seven ART providers and 10 patients were interviewed in-depth for approximately 1 h each. Interviews were systematically analyzed. RESULTS: Providers faced a range of challenges and ethical dilemmas concerning both the content and the process of decisions about requests for unconventional interfamilial and other reproductive combinations...
February 28, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28240791/is-consent-based-on-trust-morally-inferior-to-consent-based-on-information
#20
Nana Cecilie Halmsted Kongsholm, Klemens Kappel
Informed consent is considered by many to be a moral imperative in medical research. However, it is increasingly acknowledged that in many actual instances of consent to participation in medical research, participants do not employ the provided information in their decision to consent, but rather consent based on the trust they hold in the researcher or research enterprise. In this article we explore whether trust-based consent is morally inferior to information-based consent. We analyse the moral values essential to valid consent - autonomy, voluntariness, non-manipulation, and non-exploitation - and assess whether these values are less protected and promoted by consent based on trust than they are by consent based on information...
February 27, 2017: Bioethics
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