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Informed consent and autonomy

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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
#1
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
#2
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
#3
Stephen B Levin
The increasing incidence of request 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, Nonmalficience, 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
#4
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
#5
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
#6
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
#7
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
#8
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
#9
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
#10
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
#11
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
#12
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
https://www.readbyqxmd.com/read/28148333/ethical-considerations-of-transparency-informed-consent-and-nudging-in-a-patient-with-paediatric-aortic-stenosis-and-symptomatic-left-ventricular-endocardial-fibroelastosis
#13
Constantine D Mavroudis, Thomas Cook, Jeffrey P Jacobs, Constantine Mavroudis
A 9-year-old boy who was born with bicuspid aortic stenosis underwent two unsuccessful aortic valvuloplasty interventions, and by 2 years of age he developed restrictive cardiomyopathy caused by left ventricular endocardial fibroelastosis and diastolic dysfunction. The attending cardiologist referred the patient to a high-volume, high-profile congenital cardiac surgical programme 1000 miles away that has a team with considerable experience with left ventricular endocardial fibroelastosis resection and a reputation of achieving good results...
December 2016: Cardiology in the Young
https://www.readbyqxmd.com/read/28140662/pediatric-issues-in-return-of-results-and-incidental-findings-weighing-autonomy-and-best-interests
#14
Ingrid A Holm
Nowhere are the ethical issues in genomic research more complex than in pediatrics. Balancing the sometime conflicting autonomy of the parent and the child, and the best interest of the family and the child, brings up many challenging issues. Addressing this balance, especially in the context of the child's developing maturity and comprehension, requires deep analysis and discussion. Issues discussed include the impact of genetic information on the family, parental versus the child's autonomy, the best interests of the child versus the family, potential limitations on the parents' right to know or not know information about their child, and changing role of the developing child in return of research results...
March 2017: Genetic Testing and Molecular Biomarkers
https://www.readbyqxmd.com/read/28134008/prioritising-patient-care
#15
Helge Skirbekk, Marit Helene Hem, Per Nortvedt
BACKGROUND: There is little research comparing clinicians' and managers' views on priority settings in the healthcare services. During research on two different qualitative research projects on healthcare prioritisations, we found a striking difference on how hospital executive managers and clinical healthcare professionals talked about and understood prioritisations. AIM: The purpose of this study is to explore how healthcare professionals in mental healthcare and somatic medicine prioritise their care, to compare different ways of setting priorities among managers and clinicians and to explore how moral dilemmas are balanced and reconciled...
January 1, 2017: Nursing Ethics
https://www.readbyqxmd.com/read/28078909/apparent-treatment-resistant-hypertension-patient-physician-relationship-and-ethical-issues
#16
REVIEW
Julian E Mariampillai, Per Anders Eskås, Sondre Heimark, Anne Cecilie K Larstorp, Fadl Elmula M Fadl Elmula, Aud Høieggen, Per Nortvedt
BACKGROUND: Poor drug adherence is a major cause of apparent treatment-resistant hypertension. As a consequence, several methods have been developed and attempted implemented in clinical practice to reveal non-adherence and to monitor drug adherence. There are, however, several hitherto unresolved ethical aspects regarding potential methods for drug monitoring in these patients. RESULTS: The most striking challenge is the balance between patient autonomy and the physician's desire for the patient to adhere to the prescribed therapy...
June 2017: Blood Pressure
https://www.readbyqxmd.com/read/28043243/-association-between-sense-of-coherence-and-occupational-stress-of-workers-in-modern-service-industry-in-shanghai-china
#17
X Y Lu, J M Dai, N Wu, C Shu, J L Gao, H Fu
Objective: To investigate understand the current status of the sense of coherence and occupational stress in modern service workers, and to analyze the association between occupational stress and the sense of coherence. Methods: From March to April, 2016, 834 modern service workers from 3 companies in Shanghai, China (in air transportation industry, marketing industry, and travel industry) were surveyed by non-ran-dom sampling. The self-completion questionnaires were filled out anonymously given the informed consent of the workers...
October 20, 2016: Chinese Journal of Industrial Hygiene and Occupational Diseases
https://www.readbyqxmd.com/read/27996923/a-framework-for-unrestricted-prenatal-whole-genome-sequencing-respecting-and-enhancing-the-autonomy-of-prospective-parents
#18
Stephanie C Chen, David T Wasserman
Noninvasive, prenatal whole genome sequencing (NIPW) may be a technological reality in the near future, making available a vast array of genetic information early in pregnancy at no risk to the fetus or mother. Many worry that the timing, safety, and ease of the test will lead to informational overload and reproductive consumerism. The prevailing response among commentators has been to restrict conditions eligible for testing based on medical severity, which imposes disputed value judgments and devalues those living with eligible conditions...
January 2017: American Journal of Bioethics: AJOB
https://www.readbyqxmd.com/read/27934774/the-moral-agency-of-institutions-effectively-using-expert-nurses-to-support-patient-autonomy
#19
Sonya Charles
Patient autonomy-with an emphasis on informed consent and the right to refuse treatment-is a cornerstone of modern bioethics. Within discussions about patient autonomy, feminist bioethicists have argued for a relational approach to autonomy. Under a relational framework, we must look beyond the individual moment of choice to include the role relationships and specific contexts can play in supporting or undermining autonomy. Given the day-to-day interactions they have with patients, nurses play a significant role in helping patients understand the nature of their illnesses and make truly informed decisions...
December 1, 2016: Journal of Medical Ethics
https://www.readbyqxmd.com/read/27922563/-sign-here-nursing-value-and-the-process-of-informed-consent
#20
Wesley E Cook
Protecting patient autonomy is a key nursing role. The Code of Ethics (American Nurses Association, 2010), contextualizes the nurse's call to advocacy within the doctrine of informed consent. This article offers a primer on the legal, ethical, and practical aspects of procedural informed consent and examines the value of nursing's role within the process. The theory of nursing's value is sound, but the literature lacks data. Higher levels of evidence are necessary to make sound decisions about best practice for the process of informed consent...
October 2016: Plastic Surgical Nursing
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