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Informed consent and autonomy

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https://www.readbyqxmd.com/read/28794548/informed-consent-process-foundation-of-the-researcher-participant-bond
#1
Amrita Sil, Nilay Kanti Das
Consenting to participate in a clinical research study after being properly and correctly informed upholds the basic ethical principle of "autonomy" in human research. The informed consent is a process by which the physician sensitizes the patient about the nature, procedures, risks benefits, treatment schedules, etc of the study in a language that is non-technical and understandable by the study participant. Informed consent document (ICD) has got two parts: the 'Subject Information Sheet' and the 'Informed Consent Form' (ICF); and they have to be approved by the Institutional Ethics Committee (IEC) before administration...
July 2017: Indian Journal of Dermatology
https://www.readbyqxmd.com/read/28789658/healthcare-professionals-and-patients-perspectives-on-consent-to-clinical-genetic-testing-moving-towards-a-more-relational-approach
#2
Gabrielle Natalie Samuel, Sandi Dheensa, Bobbie Farsides, Angela Fenwick, Anneke Lucassen
BACKGROUND: This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. METHODS: We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK's National Health Service (data collected 2013-2015)...
August 8, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28774956/ethics-of-patient-activation-exploring-its-relation-to-personal-responsibility-autonomy-and-health-disparities
#3
Sophia H Gibert, David DeGrazia, Marion Danis
Discussions of patient-centred care and patient autonomy in bioethics have tended to focus on the decision-making context and the process of obtaining informed consent, leaving open the question of how patients ought to be counselled in the daily maintenance of their health and management of chronic disease. Patient activation is an increasingly prominent counselling approach and measurement tool that aims to improve patients' confidence and skills in managing their own health conditions. The strategy, which has received little conceptual or ethical analysis, raises important questions about how clinicians ought to foster confidence and a sense of control in their patients without exposing them to blame, stigma and other harms...
August 3, 2017: Journal of Medical Ethics
https://www.readbyqxmd.com/read/28767456/effects-of-anaesthesia-and-analgesia-on-long-term-outcome-after-total-knee-replacement-a-prospective-observational-multicentre-study
#4
Dario Bugada, Massimo Allegri, Marco Gemma, Andrea L Ambrosoli, Giuseppe Gazzerro, Fernando Chiumiento, Doriana Dongu, Fiorella Nobili, Andrea Fanelli, Paolo Ferrua, Massimo Berruto, Gianluca Cappelleri
BACKGROUND: Perioperative regional anaesthesia may protect from persistent postsurgical pain (PPSP) and improve outcome after total knee arthroplasty (TKA). OBJECTIVES: Aim of this study was to evaluate the impact of regional anaesthesia on PPSP and long-term functional outcome after TKA. DESIGN: A web-based prospective observational registry. SETTING: Five Italian Private and University Hospitals from 2012 to 2015. PATIENTS: Undergoing primary unilateral TKA, aged more than 18 years, informed consent, American Society of Anesthesiologists (ASA) physical status classes 1 to 3, no previous knee surgery...
August 1, 2017: European Journal of Anaesthesiology
https://www.readbyqxmd.com/read/28755143/relational-autonomy-in-informed-consent-raic-as-an-ethics-of-care-approach-to-the-concept-of-informed-consent
#5
Peter I Osuji
The perspectives of the dominant Western ethical theories, have dominated the concepts of autonomy and informed consent for many years. Recently this dominant understanding has been challenged by ethics of care which, although, also emanates from the West presents a more nuanced concept: relational autonomy, which is more faithful to our human experience. By paying particular attention to relational autonomy, particularity and Process approach to ethical deliberations in ethics of care, this paper seeks to construct a concept of informed consent from the perspective of ethics of care which is here called relational autonomy-in-informed consent (RAIC)...
July 28, 2017: Medicine, Health Care, and Philosophy
https://www.readbyqxmd.com/read/28749063/patients-as-rights-holders
#6
Johan Brännmark
Autonomy and consent have been central values in Western moral and political thought for centuries. One way of understanding the bioethical models that started to develop, especially in the 1970s, is that they were about the fusion of a long-standing professional ethics with the core values underpinning modern political institutions. That there was a need for this kind of fusion is difficult to dispute, especially since the provision of health care has in most developed countries become an ever more important concern of our political institutions, with governments playing a significant role in regulating and facilitating the provision of health care and in many countries even largely organizing it...
July 2017: Hastings Center Report
https://www.readbyqxmd.com/read/28749059/expanding-the-horizon-of-our-obligations-in-the-clinician-patient-relationship
#7
Robert D Truog
Johan Brännmark's article "Patients as Rights Holders," in this issue of the Hastings Center Report, squarely identifies some important problems with the way we in clinical practice conceive of our obligations to our patients. As a solution, he helpfully suggests augmenting our focus on autonomy and informed consent with a broader menu of considerations drawn from the literature on human rights. Respect for autonomy is, of course, one of the hallowed principles of bioethics. In our traditional understanding, our patients deserve our respect because they are capable of autonomous choice, and the way we demonstrate our respect is by seeking their informed consent for our care...
July 2017: Hastings Center Report
https://www.readbyqxmd.com/read/28744966/social-media-and-organ-donation-ethically-navigating-the-next-frontier
#8
Macey L Henderson, Kristel A Clayville, Jonathan S Fisher, Kristin K Kuntz, Harvey Mysel, Tanjala S Purnell, Randolph L Schaffer, Laurence A Sherman, Elizabeth P Willock, Elisa J Gordon
As the organ shortage continues to grow, the creation of social media communities by transplant centers and the public is rapidly expanding to increase the number of living donors. Social media communities are arranged in myriad ways, and without standardization, raising concerns about potential recipients' and potential donors' autonomy and quality of care. Social media communities magnify and modify extant ethical issues in deceased and living donation related to privacy, confidentiality, professionalism, and informed consent, and increase the potential for undue influence and coercion for potential living donors and transplant candidates...
July 25, 2017: American Journal of Transplantation
https://www.readbyqxmd.com/read/28716389/biomedical-ethics-and-clinical-oversight-in-multisite-observational-neuroimaging-studies-with-children-and-adolescents-the-abcd-experience
#9
REVIEW
Duncan B Clark, Celia B Fisher, Susan Bookheimer, Sandra A Brown, John H Evans, Christian Hopfer, James Hudziak, Ivan Montoya, Margaret Murray, Adolf Pfefferbaum, Deborah Yurgelun-Todd
Observational neuroimaging studies with children and adolescents may identify neurological anomalies and other clinically relevant findings. Planning for the management of this information involves ethical considerations that may influence informed consent, confidentiality, and communication with participants about assessment results. Biomedical ethics principles include respect for autonomy, beneficence, non-maleficence, and justice. Each project presents unique challenges. The Adolescent Brain and Cognitive Development study (ABCD) collaborators have systematically developed recommendations with written guidelines for identifying and responding to potential risks that adhere to biomedical ethics principles...
June 28, 2017: Developmental Cognitive Neuroscience
https://www.readbyqxmd.com/read/28689386/surgical-informed-consent-process-in-neurosurgery
#10
REVIEW
Jaechan Park, Hyojin Park
The doctrine of informed consent, as opposed to medical paternalism, is intended to facilitate patient autonomy by allowing patient participation in the medical decision-making process. However, regrettably, the surgical informed consent (SIC) process is invariably underestimated and reduced to a documentary procedure to protect physicians from legal liability. Moreover, residents are rarely trained in the clinical and communicative skills required for the SIC process. Accordingly, to increase professional awareness of the SIC process, a brief history and introduction to the current elements of SIC, the obstacles to patient autonomy and SIC, benefits and drawbacks of SIC, planning of an optimal SIC process, and its application to cases of an unruptured intracranial aneurysm are all presented...
July 2017: Journal of Korean Neurosurgical Society
https://www.readbyqxmd.com/read/28665879/-at-our-age-we-would-like-to-do-things-the-way-we-want-a-qualitative-study-of-adolescent-hiv-testing-services-in-kenya
#11
Kate S Wilson, Kristin M Beima-Sofie, Helen Moraa, Anjuli D Wagner, Cyrus Mugo, Peter M Mutiti, Dalton Wamalwa, David Bukusi, Grace C John-Stewart, Jennifer A Slyker, Pamela K Kohler, Gabrielle O'Malley
OBJECTIVES: Adolescents in Africa have low HIV testing rates. Better understanding of adolescent, provider, and caregiver experiences in high-burden countries such as Kenya could improve adolescent HIV testing programs. DESIGN: We conducted 16 qualitative interviews with HIV-positive and HIV-negative adolescents (13-18 years) and six focus group discussions with Healthcare workers (HCWs) and caregivers of adolescents in Nairobi, Kenya. METHODS: Semi-structured interviews and focus groups were recorded and transcribed...
July 1, 2017: AIDS
https://www.readbyqxmd.com/read/28661279/beyond-canterbury-can-medicine-and-law-agree-about-informed-consent-and-does-it-matter
#12
Marc D Ginsberg
Informed consent is central to the law of the physicianpatient relationship, respecting patient autonomy. This paper addresses a conflict between law and medicine in defining informed consent. Additionally, it addresses the possibility that patients prefer not to be "informed" and would defer decision-making to their physicians.
March 2017: Journal of Law, Medicine & Ethics: a Journal of the American Society of Law, Medicine & Ethics
https://www.readbyqxmd.com/read/28661275/informed-consent-as-societal-stewardship
#13
Nadia N Sawicki
When individual patients' medical decisions contribute to population-level trends, physicians may struggle with how to promote justice while maintaining respect for patient autonomy. This article argues that this tension might be resolved by using the informed consent conversation as an opportunity to position patients as societal stewards.
March 2017: Journal of Law, Medicine & Ethics: a Journal of the American Society of Law, Medicine & Ethics
https://www.readbyqxmd.com/read/28659067/dignity-realization-of-patients-with-stroke-in-hospital-care-a-grounded-theory
#14
Sunna Rannikko, Minna Stolt, Riitta Suhonen, Helena Leino-Kilpi
BACKGROUND: Dignity is seen as an important but complex concept in the healthcare context. In this context, the discussion of dignity includes concepts of other ethical principles such as autonomy and privacy. Patients consider dignity to cover individuality, patient's feelings, communication, and the behavior of healthcare personnel. However, there is a lack of knowledge concerning the realization of patients' dignity in hospital care and the focus of the study is therefore on the realization of dignity of the vulnerable group of patients with stroke...
January 1, 2017: Nursing Ethics
https://www.readbyqxmd.com/read/28642690/autonomy-in-depressive-patients-undergoing-dbs-treatment-informed-consent-freedom-of-will-and-dbs-potential-to-restore-it
#15
Timo Beeker, Thomas E Schlaepfer, Volker A Coenen
According to the World Health Organization, depression is one of the most common and most disabling psychiatric disorders, affecting at any given time approximately 325 million people worldwide. As there is strong evidence that depressive disorders are associated with a dynamic dysregulation of neural circuits involved in emotional processing, recently several attempts have been made to intervene directly in these circuits via deep brain stimulation (DBS) in patients with treatment-resistant major depressive disorder (MDD)...
2017: Frontiers in Integrative Neuroscience
https://www.readbyqxmd.com/read/28638327/noninvasive-brain-stimulation-and-personal-identity-ethical-considerations
#16
Jonathan Iwry, David B Yaden, Andrew B Newberg
As noninvasive brain stimulation (NIBS) technology advances, these methods may become increasingly capable of influencing complex networks of mental functioning. We suggest that these might include cognitive and affective processes underlying personality and belief systems, which would raise important questions concerning personal identity and autonomy. We give particular attention to the relationship between personal identity and belief, emphasizing the importance of respecting users' personal values. We posit that research participants and patients should be encouraged to take an active approach to considering the personal implications of altering their own cognition, particularly in cases of neurocognitive "enhancement...
2017: Frontiers in Human Neuroscience
https://www.readbyqxmd.com/read/28606067/through-the-client-s-eyes-using-narratives-to-explore-experiences-of-care-transfers-during-pregnancy-childbirth-and-the-neonatal-period
#17
Cherelle M V van Stenus, Mark Gotink, Magda M Boere-Boonekamp, Anneke Sools, Ariana Need
BACKGROUND: The client experience is an important outcome in the evaluation and development of perinatal healthcare. But because clients meet different professionals, measuring such experiences poses a challenge. This is especially the case in the Netherlands, where pregnant women are often transferred between professionals due to the nation's approach to risk selection. This paper explores questions around how clients experience transfers of care during pregnancy, childbirth, and the neonatal period, as well as how these experiences compare to the established quality of care aspects the Dutch Patient Federation developed...
June 12, 2017: BMC Pregnancy and Childbirth
https://www.readbyqxmd.com/read/28599638/development-of-a-consensus-operational-definition-of-child-assent-for-research
#18
Alan R Tait, Michael E Geisser
BACKGROUND: There is currently no consensus from the relevant stakeholders regarding the operational and construct definitions of child assent for research. As such, the requirements for assent are often construed in different ways, institutionally disparate, and often conflated with those of parental consent. Development of a standardized operational definition of assent would thus be important to ensure that investigators, institutional review boards, and policy makers consider the assent process in the same way...
June 9, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28585456/potential-conflicts-in-midwifery-practice-regarding-conscientious-objection-to-abortions-in-scotland
#19
Valerie Fleming, Yvonne Robb
BACKGROUND: This study was developed as a result of a court case involving conflicts between midwives' professional practice and their faith when caring for women undergoing abortions in Scotland. RESEARCH QUESTIONS: What are practising Roman Catholics' perspectives of potential conflicts between midwives' professional practice in Scotland with regard to involvement in abortions and their faith? How relevant is the 'conscience clause' to midwifery practice today? and What are participants' understandings of Canon 1398 in relation to midwifery practice? RESEARCH DESIGN: The theoretical underpinning of this study was Gadamer's hermeneutic out of which the method developed by Fleming et al...
January 1, 2017: Nursing Ethics
https://www.readbyqxmd.com/read/28576618/giving-birth-expectations-of-first-time-mothers-in-switzerland-at-the-mid-point-of-pregnancy
#20
Valerie Fleming, Yvonne Meyer, Franziska Frank, Susanne van Gogh, Laura Schirinzi, Bénédicte Michoud, Claire de Labrusse
PROBLEM AND BACKGROUND: Despite a generally affluent society, the caesarean section rate in Switzerland has steadily climbed in recent years from 22.9% in 1998 to 33.7% in 2014. Speculation by the media has prompted political questions as to the reasons. However, there is no clear evidence as to why the Swiss rate should be so high especially in comparison with neighbouring countries. AIM: To describe the emerging expectations of giving birth of healthy primigravid women in the early second semester of pregnancy in four Swiss cantons...
May 30, 2017: Women and Birth: Journal of the Australian College of Midwives
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