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Informed consent and autonomy

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https://www.readbyqxmd.com/read/28425315/caring-in-nursing-homes-to-promote-autonomy-and-participation
#1
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
#2
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
#3
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
#4
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
#5
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
#6
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 10, 2017: Substance Abuse
https://www.readbyqxmd.com/read/28377472/time-to-improve-informed-consent-for-dialysis-an-international-perspective
#7
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
#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/28336803/facilitating-the-ethical-use-of-health-data-for-the-benefit-of-society-electronic-health-records-consent-and-the-duty-of-easy-rescue
#9
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
#10
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
#11
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
#12
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
#13
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
#14
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
#15
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
https://www.readbyqxmd.com/read/28231334/prevalence-of-hpv-16-and-18-and-attitudes-toward-hpv-vaccination-trials-in-patients-with-cervical-cancer-in-mali
#16
Ibrahima Téguété, Amadou Dolo, Kotou Sangare, Abdoulaye Sissoko, Mali Rochas, Sarah Beseme, Karamoko Tounkara, Shahla Yekta, Anne S De Groot, Ousmane A Koita
BACKGROUND: Cervical cancer is one of the most common and lethal cancers in West Africa. Even though vaccines that protect against the most common Human papillomavirus (HPV) strains, 16 and 18, are currently in use in developed countries, the implementation of these vaccines in developing countries has been painfully slow, considering the pre-eminence of HPV-associated cervical cancer among women in those countries. AIM: We performed serological and PCR-based assessment of blood and tissue specimens obtained from women undergoing cervical cancer-related surgery at a major urban hospital in Bamako...
2017: PloS One
https://www.readbyqxmd.com/read/28195536/patient-autonomy-within-real-or-valid-consent-samira-kohli-s-case
#17
Supriya Subramani
In bioethics literature, the primary justification for the requirement of informed consent has been the protection of autonomous choices. To allow patients to be autonomous decision-makers, physicians are supposed to disclose and share information related to all treatment, procedures and risks. Advocates of the autonomy-based informed consent model argue that in informed consent cases, the disclosure of information should be according to the reasonable person standard or reasonable patient standard, rather than the average competent physician standard...
January 18, 2017: Indian Journal of Medical Ethics
https://www.readbyqxmd.com/read/28190696/ethical-issues-in-research
#18
REVIEW
Raul Artal, Sheldon Rubenfeld
Biomedical research is currently guided by ethical standards that have evolved over many centuries. Historical and political events, social and legal considerations, and continuous medical and technological advances have led to the prevailing research ethics and practice. Currently, patients and research subjects have complete autonomy while under medical care or when volunteering as research subjects. Enrolling volunteers in human subjects research includes a detailed and meaningful informed consent process that follows the cardinal principles of ethics: autonomy, beneficence, nonmaleficence, and justice...
January 23, 2017: Best Practice & Research. Clinical Obstetrics & Gynaecology
https://www.readbyqxmd.com/read/28170159/a-novel-emergency-department-based-community-notification-method-for-clinical-research-without-consent
#19
Gerald F O'Malley, Patricia Giraldo, Kenneth Deitch, Elizabeth Andrea Aguilera, Sorin Cadar, Claudia Lares, Rika Nagakuni O'Malley, Nino Oqroshidze, Manisha Verma, Carl Chudnofsky
Providing and receiving informed consent to critically ill or moribund subjects is ethically and practically challenging.(1) Historically the concept of autonomy requires research subjects to receive and provide informed consent prior to participating in clinical research. The nature of resuscitation research prevents two-way communication and ethical informed consent. In 1996 the FDA released a set of guidelines allowing for exception from informed consent (EFIC) for emergency research, provided certain requirements are met (21 CF 50...
February 7, 2017: Academic Emergency Medicine: Official Journal of the Society for Academic Emergency Medicine
https://www.readbyqxmd.com/read/28150264/-the-use-of-informed-consent-in-clinical-nursing-practice
#20
Chun-Ting Cheng, Chiu-Chu Lin
Obtaining informed consent and ensuring patient autonomy are critical to implementing a patient-centered model of healthcare. Informed consent is a complex process of communication that includes three elements: disclosure, competence in making decisions, and voluntariness. However, individual patient factors, doctor-patient interaction, and cultural issues are known to influence the process of obtaining informed consent. Individual patient factors include the ability of patients to understand and determine their intent; doctor-patient interaction includes communication skills; and cultural issues include the expectations of patients with regard to family involvement in medical decision-making and in decision-making motives...
February 2017: Hu Li za Zhi the Journal of Nursing
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