103,586 results on '"Informed consent"'
Search Results
402. Communicating Risk with Parents: Exploring the Methods and Beliefs of Outdoor Education Coordinators in Victoria, Australia
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Dallat, Clare
- Abstract
This paper examines the risk communication strategies currently being employed by seven outdoor education co-ordinators in Government schools in Victoria, Australia. Of particular interest are the beliefs and assumptions held by these co-ordinators in relation to communicating risk with parents. Current policy stipulates that parents must be sufficiently informed in order to provide consent for their child to participate in an outdoor education program, however it does not specify a specific model or approach to be followed. Coronial reports, recommendations and litigation following several fatal outdoor education incidents both in Australia and other countries, suggest that parents were not appropriately informed of the risks involved, or were given insufficient information on which to base their consent. These types of incidents, coupled with the assertion that we are now living in an increasingly litigious and "blamist" society, serve to highlight the need for communications where parents are viewed as integral stakeholders. A qualitative research methodology was used and the seven co-ordinators provided examples of their risk communication and participated in a semi-standardised interview. Co-ordinators' current methods for communicating risk were analysed within the context of current theoretical thinking in risk communication and the interview findings solicited the associated beliefs and assumptions behind these strategies. Overall, the "deficit" model of risk communication was being employed by the co-ordinators. This model does not consciously allow for the perceptions and worldviews of the parents. It is essentially "one-way." Finally, I suggest strategies for developing a holistic model of risk communication, within the context of current theoretical thinking, where parents are invited to be more involved in decisions about risk involving their child.
- Published
- 2009
403. Assessment of Older Adults with Diminished Capacity: A Handbook for Psychologists
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American Psychological Association and American Bar Association (ABA)
- Abstract
The American Bar Association-American Psychological Association (ABA-APA) Working Group on the Assessment of Capacity in Older Adults was established in 2003 under the auspices of the Task Force on Facilitating ABA-APA Relations. This handbook is designed for psychologists evaluating civil capacities of older adults. Contemporary probate law encourages functional assessments that describe task-specific deficits rather than global findings. With training in standardized cognitive and functional assessment, psychologists are in an ideal position to provide such evaluations. The specific goal of this handbook is to review psychological assessment of six civil capacities of particular importance to older adults, namely, medical consent capacity, sexual consent capacity, financial capacity, testamentary capacity, capacity to drive, and capacity to live independently. It also addresses the important topic of undue influence and introduces emerging areas of interest, such as the capacity to mediate, the capacity to participate in research, and the capacity to vote. [This work was funded by the Borchard Foundation Center on Law and Aging.]
- Published
- 2008
404. Views of Evidence-Based Practice: Social Workers' Code of Ethics and Accreditation Standards as Guides for Choice
- Author
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Gambrill, Eileen
- Abstract
Different views of evidence-based practice (EBP) include defining it as the use of empirically-validated treatments and practice guidelines (i.e., the EBPs approach) in contrast to the broad philosophy and related evolving process described by the originators. Social workers can draw on their code of ethics and accreditation standards both to select a view of EBP that is most faithful to related obligations and to address obstacles to implementing it. For example, the Code of Ethics (National Association of Social Workers, 1999) calls on social workers to draw on practice- and policy-related research findings, to honor informed consent guidelines, and to respect clients and empower them. (Contains 2 tables.)
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- 2007
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405. Guidelines for the Ethical Conduct of Research in Composition Studies. Position Statement. Revised
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National Council of Teachers of English (NCTE), Conference on College Composition and Communication (CCCC)
- Abstract
The Conference on College Composition and Communication (CCCC) represents teachers and researchers of composition and communication in all possible genres, media, contexts, and exigencies; for the purpose of these guidelines, "writers" and "writing" will be all-encompassing, and the term "researcher" will refer to anyone who undertakes a study. Members of the CCCC share a commitment to protecting the rights, privacy, dignity, and well-being of the persons who are involved in their studies, whether as participants or co-researchers. These guidelines are intended to assist researchers in fulfilling this commitment. They apply to all efforts by scholars, teachers, administrators, students, and others that are directed toward publication of a book or journal article, presentation at a conference, preparation of a thesis or dissertation, display on a website, or other general dissemination of the results of research and scholarship. The guidelines apply to formally planned investigations. Topics covered include: (1) Compliance; (2) Maintaining Competence; (3) Recruiting; (4) Obtaining Informed Consent; (5) Conducting Studies Involving Classes; (6) Conducting Studies Outside the Classroom; (7) Conducting Studies Involving Digital/Online Media; (8) Conducting Studies Involving Archival Work; (9) Conducting Studies Involving Assessment Data; (10) Using Unpublished Writing Collected Outside of an IRB-Approved Study; (11) Quoting, Paraphrasing, and Reporting Statements; (12) Describing Individuals and Groups; (13) Using Video, Audio, Photographs, and Other Identifiable Representations of Participants; (14) Working with Co-Researchers and Co-Authors; (15) Working with Editors/Publishers; and (16) Indicating Possible Financial Conflicts of Interest. [These guidelines were established in November 2003 and revised in March 2015.]
- Published
- 2015
406. Handbook of Research Methods in Early Childhood Education--Volume 2. Contemporary Perspectives in Early Childhood Education
- Author
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Saracho, Olivia and Saracho, Olivia
- Abstract
The "Handbook of Research Methods in Early Childhood Education" brings together in one source research techniques that researchers can use to collect data for studies that contribute to the knowledge in early childhood education. To conduct valid and reliable studies, researchers need to be knowledgeable about numerous research methodologies. The Handbook primarily addresses the researchers, scholars, and graduate or advanced undergraduate students who are preparing to conduct research in early childhood education. It provides them with the intellectual resources that will help them join the cadre of early childhood education researchers and scholars. The purpose of the Handbook is to prepare and guide researchers to achieve a high level of competence and sophistication, to avoid past mistakes, and to benefit from the best researchers in the field. This Handbook is also useful to university professors who conduct research and prepare student researchers in early childhood education. It aims to improve the researchers' conceptual and methodological abilities in early childhood education. Thus, the Handbook can be used as a guide that focuses on important contemporary research methodologies in early childhood education and describes them to offer researchers the necessary information to use these methodologies appropriately. This Handbook is designed to be used by students of early childhood education at all levels of professional development as well as mature scholars who want to conduct research in areas needing more in-depth study. It is hoped that this Handbook of Research Methods in Early Childhood Education will serve the needs of many in the research community. Scholars seeking the current state of research knowledge in various areas should find this volume useful. Similarly, practitioners who are trying to seek knowledge of research and its practical implications should find this volume helpful as well. This Handbook with its individual chapters presents several research methodologies to address a variety of hypotheses or research questions that will contribute to the knowledge of the field in early childhood education. Titles in the book include: (1) Perspectives on Research Methodologies in Early Childhood Education (Olivia N. Saracho); (2) Using Naturalistic Observation to Study Children's Engagement within Early Childhood Classrooms (Jennifer Marcella and Carollee Howes); (3) Using Observational Assessment in Conducting Research with Young Children in Classroom Settings (Lynn Darling and Cathy Grace); (4) Observing the Social Interactions of Children with Disabilities: To Answer Critical Research Questions in Early Childhood (Michaelene M. Ostrosky and Chryso Mouzourou); (5) The Interrelated Roles of Early Childhood Policy and Early Childhood Research (Susan A. Fowler, Dawn V. Thomas, Catherine Corr, and Natalie Danner); (6) Research with Young Children and Their Families in Indigenous, Immigrant and Refugee Communities (Ann Anderson, Jim Anderson, Jan Hare, and Marianne McTavish); (7) Methods for Assessing Parent-Child Interactions in Large-Scale Studies (Natalie Brito, Rebecca Ryan', and Rachel Barr); (8) The Methodological Tortoise and the Technological Hare: A Discussion of Methods for Conducting Research on New Technologies and Young Children (Louise P. Flannery and Marina U. Bers); (9) Using Video Modeling in Conducting Research with Young Children (David F. Cihak, Catherine C. Smith, Don D. McMahon, and Janice Ramsey); (10) Studying Young Children's Cognitive and Social-Emotional Development with ERP Methodology (Doris Bergen); (11) Exploring the Significance of Linguistic and Culturally Diversity: Ethnomethodology and the Use of PhotoVoice (Eugene E. García and Jeronimo Chávez Zamora); (12) Interviewing Young Children Using Psycho- and Micro-Genetic Design Methodology to Assess Understandings of Reading and Writing: The Promise and Challenge (David B. Yaden, Jr., Robert Rueda, Joan Tardibuono, Camille Martinez, Atousa Mirzaei, Bridget Scott-Weich, and Tina Tsai); (13) Research Methods in the Motor Domain in Early Childhood (Jacqueline D. Goodway, Ali Brian, Seung Ho Chang, and Seung Yeon Park); (14) New Directions in Researching Young Children's Art Making (Christine Marmé Thompson, Marissa McClure, Christopher M. Schulte, and Kristine Sunday); (15) Using Children's Drawings as a Source of Data in Research (Linda J. Harrison); (16) Researching Play in Early Childhood (James E. Johnson, Monirah Al-Mansour, and Serap Sevimli-Celik); (17) Children's Selective Trust in Others: Developments, Practices and Problems (Jason M. Cowell, Erin C. Casey, Chelsea Hetherington, Elizabeth C. Stephens, and Melissa A. Koenig; (18) Researching Social Agency and Morality: Theory and Practice for Working with Younger Children (Sam Frankel); (19) Teachers and Research: Gatekeeper, Participant, and Partner Roles (Nancy File and Ashley Midthun); (20) Research Methods and Ethics Working With Young Children (David Birbeck and Murray Drummond); (21) The Ethics of Research with Young Children (Priscilla Alderson); (22) Engaging with Young Children as Co-Researchers: A Child Rights-Based Approach L(aura Lundy and Beth Blue Swadener); (23) Participatory Rights-Based Research: Learning from Young Children's Perspectives in Research That Affects Their Lives (Sue Dockett and Bob Perry); and (21) Informed Consent in Research with Young Children: Consensus, Critique, and Contextual Negotiation (Michael Gallagher). An About the Contributors section is included. [For "Handbook of Research Methods in Early Childhood Education--Volume I. Contemporary Perspectives in Early Childhood Education," see ED598644.]
- Published
- 2014
407. Presenters in Focus: School-Based Social-Emotional and Behavior Screening--Using Data to Guide Interventions
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Eklund, Katie and Kilgus, Stephen
- Abstract
Systematic screening for behavioral and social-emotional concerns at school is one way to ensure that at-risk children are identified and provided services. School psychologists play a critical role in creating multitiered systems of support that consider universal screening, early intervention, and ongoing progress monitoring to help support students with behavioral concerns. In this "Presenters in Focus" Q&A, convention presenters Katie Eklund and Stephen Kilgus discuss best practice strategies for engaging in universal screening at school and how these data can inform service delivery considerations. They will explore these issues in more depth during their Field-Based Skills Session, "School-Based Social-Emotional and Behavior Screening: Using Data to Guide Interventions," at the 2018 national convention in Chicago.
- Published
- 2017
408. Introducing Empowered Consent to Deal With the Current Challenges in Applied Sport Psychology.
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Feddersen, Niels Boysen
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SPORTS psychology ,APPLIED psychology ,SELF-efficacy ,INFORMED consent (Medical law) ,SPORTS ethics ,PRACTICE (Sports) ,RESEARCH personnel ,BEST practices - Abstract
There has been a paucity of literature discussing how to address consent procedures as part of ethics, practitioner development, and best practice in applied sport psychology. Several researchers have addressed ethical challenges (e.g., out-of-session contact, overidentification, time, and space). However, none have substantially considered the sport-specific issues related to consent, which sits at the heart of best practice. The scarcity of discussing consent is limiting sport psychology's potential to establish itself as a more recognized profession. This article highlights some contextual issues that challenge the idea and efficacy of informed consent. It proposes adapting consent procedures in the collaboration between sport psychology practitioners and clients to better address the current contextual challenges in applied sport psychology. In doing so, the current paper introduces Empowered Consent, which is specifically designed to empower athletes and address challenges related to choosing interventions, contractual obligations, visibility in the environment, and staff trying to gain insights into confidential information. The author offers a model to enhance applied practice for those collaborating with athletes and other clients in sport. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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409. Distributed management of patient data-sharing informed consents for clinical research.
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Pham, Anh, Edelson, Maxim, Nouri, Armin, and Kuo, Tsung-Ting
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Clinical information systems ,Electronic health records ,National health information infrastructure ,Privacy and security ,Software architecture ,Humans ,Informed Consent ,Biomedical Research ,Information Dissemination ,Blockchain ,Electronic Health Records - Abstract
BACKGROUND: The consent protocol is now a critical part in the overall orchestration of clinical research. We aimed to demonstrate the feasibility of an Ethereum-based informed consent system, which includes an immutable and automated channel of consent matching, to simultaneously assure patient privacy and increase the efficiency of researchers data access. METHOD: We simulated a multi-site scenario, each assigned 10000 consent records. A consent record contained one patients data-sharing preference with regards to seven data categories. We developed a blockchain-based infrastructure with a smart contract to record consents on-chain, and to query consenting patients corresponding to specific criteria. We measured our systems recording efficiency against a baseline design and verified accuracy by testing an exhaustive list of possible queries. RESULTS: Our method achieved ∼3-4% lead with an average insertion speed of ∼2 s per record per node on either a 3-, 4- or 5-node network, and 100 % accuracy. It also outperformed other solutions in external validation. DISCUSSION: The speed we achieved is reasonable in a real-world system under the realistic assumption that patients may not change their minds too frequently, with the added benefit of immutability. Furthermore, the per-insertion time did improve slightly as the number of network nodes increased, attesting to the benefit of node parallelism as it suggests no attrition of insertion efficiency due to scale of nodes. CONCLUSIONS: Our work confirms the technical feasibility of a blockchain-based consent mechanism, assuring patients with an immutable audit trail, and providing researchers with an efficient way to reach their cohorts.
- Published
- 2024
410. Assessing readiness: the impact of an experiential learning entrustable professional activity-based residency preparatory course
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Ha, Edward L, Glaeser, Alexandra Milin, Wilhalme, Holly, and Braddock, Clarence
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Curriculum and Pedagogy ,Education ,Internship and Residency ,Humans ,Clinical Competence ,Problem-Based Learning ,Students ,Medical ,Educational Measurement ,Curriculum ,Self-Assessment ,Retrospective Studies ,Surveys and Questionnaires ,Female ,Education ,Medical ,Undergraduate ,Entrustable professional activities ,medical education ,simulation ,transition to residency ,procedures ,informed consent ,Public Health and Health Services ,Specialist Studies in Education ,Curriculum and pedagogy ,Health services and systems - Abstract
As medical schools move to integrate the Core Entrustable Professional Activities for Entering Residency (EPAs) into curricula and address the transition from student to resident, residency preparatory courses have become more prevalent. The authors developed an experiential learning EPA-based capstone course for assessment to determine impact on learner self-assessed ratings of readiness for residency and acquisition of medical knowledge. All fourth-year students from the classes of 2018-2020 completed a required course in the spring for assessment of multiple EPAs, including managing core complaints, performing basic procedures, obtaining informed consent, and providing patient handoffs. Learners selected between three specialty-based parallel tracks - adult medicine, surgery, or pediatrics. Students completed a retrospective pre-post questionnaire to provide self-assessed ratings of residency preparedness and comfort in performing EPAs. Finally, the authors studied the impact of the course on knowledge acquisition by comparing student performance in the adult medicine track on multiple choice pre- and post-tests. Four hundred and eighty-one students were eligible for the study and 452 (94%) completed the questionnaire. For all three tracks, there was a statistically significant change in learner self-assessed ratings of preparedness for residency from pre- to post-course (moderately or very prepared: adult medicine 61.4% to 88.6% [p-value < 0.001]; surgery 56.8% to 81.1% [p-value < 0.001]; pediatrics 32.6% to 83.7% [p-value 0.02]). A similar change was noted in all tracks in learner self-assessed ratings of comfort from pre- to post-course for all studied EPAs. Of the 203 students who participated in the adult medicine track from 2019-2020, 200 (99%) completed both the pre- and post-test knowledge assessments. The mean performance improved from 65.0% to 77.5% (p-value < 0.001). An experiential capstone course for the assessment of EPAs can be effective to improve learner self-assessed ratings of readiness for residency training and acquisition of medical knowledge.
- Published
- 2024
411. Clinical trial recruitment of people who speak languages other than English: a Childrens Oncology Group report.
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Beauchemin, Melissa, Ortega, Maria, Santacroce, Sheila, Robles, Joanna, Ruiz, Jenny, Hall, Anurekha, Kahn, Justine, Fu, Cecilia, Orjuela-Grimm, Manuela, Hillyer, Grace, Solomon, Samrawit, Pelletier, Wendy, Montiel-Esparza, Raul, Blazin, Lindsay, Kline, Cassie, Seif, Alix, Aristizabal, Paula, Winestone, Lena, and Velez, Maria
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Humans ,Patient Selection ,Clinical Trials as Topic ,Language ,Child ,Communication Barriers ,Translating ,Consent Forms ,Surveys and Questionnaires ,Informed Consent ,Neoplasms - Abstract
BACKGROUND: Persons who speak languages other than English are underrepresented in clinical trials, likely in part because of inadequate multilevel resources. We conducted a survey of institutions affiliated with the Childrens Oncology Group (COG) to characterize current research recruitment practices and resources regarding translation and interpretation services. METHODS: In October 2022, a 20-item survey was distributed electronically to institutions affiliated with COG to assess consent practices and resources for recruiting participants who speak languages other than English to COG trials. Descriptive statistics were used to summarize responses; responses were compared by institution size and type as well as respondent role. RESULTS: The survey was sent to 230 institutions, and the response rate was 60% (n = 139). In total, 60% (n = 83) of those respondents had access to short-form consent forms. Full consent form translation was required at 50% of institutions, and 12% of institutional review boards restricted use of centrally translated consent forms. Forty-six percent (n = 64) of institutions reported insufficient funding to support translation costs; 19% (n = 26) had access to no-cost translation services. Forty-four percent (n = 61) were required to use in-person interpreters for consent discussions; the most frequently cited barrier (56%) to obtaining consent was lack of available in-person interpreters. Forty-seven percent (n = 65) reported that recruiting persons who speak languages other than English to clinical trials was somewhat or very difficult. CONCLUSIONS: Institutions affiliated with COG face resource-specific challenges that impede recruitment of participants who speak languages other than English for clinical trials. These findings indicate an urgent need to identify strategies aimed at reducing recruitment barriers to ensure equitable access to clinical trials.
- Published
- 2024
412. Prevalence of different variations of non-consented care during the childbirth process in Mexico by geographical regions: comparing ENDIREH survey data from 2016 to 2021.
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Marian, Marian, Barker, Kathryn, Reed, Elizabeth, McClain, Amanda, Lundgren, Rebecka, Hurst, Samantha, and Pérez, Ramona
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Childbirth ,Delivery ,Mexico ,Non-consented care ,Obstetric violence ,Violence against women ,Humans ,Female ,Mexico ,Pregnancy ,Adult ,Cross-Sectional Studies ,Prevalence ,Cesarean Section ,Young Adult ,Parturition ,Adolescent ,Informed Consent ,Delivery ,Obstetric ,Surveys and Questionnaires ,Sterilization ,Reproductive ,Contraception - Abstract
INTRODUCTION: Non-consented care, a form of obstetric violence involving the lack of informed consent for procedures, is a common but little-understood phenomenon in the global public health arena. The aim of this secondary analysis was to measure the prevalence and assess change over time of non-consented care during childbirth in Mexico in 2016 and 2021, as well as to examine the association of sociodemographic, pregnancy-, and childbirth-factors with this type of violence. METHODS: We measured the prevalence of non-consented care and three of its variations, forced sterilization or contraception, forced cesarean section, and forced consent on paperwork, during childbirth in Mexico for 2016 (N = 24,036) and 2021 (N = 19,322) using data from Mexicos cross-sectional National Survey on the Dynamics of Household Relationships (ENDIREH). Weighted data were stratified by geographical regions. We performed adjusted logistic regression analyses to explore associations. RESULTS: The national prevalence of non-consented care and one of its variations, pressure to get a contraceptive method, increased from 2016 to 2021. A decrease in the prevalence was observed for forced contraception or sterilization without knowledge, forcing women to sign paperwork, and non-consented cesarean sections nationally and in most regions. Women between the ages of 26 and 35 years, married, cohabiting with partner, living in urban settings, who do not identify as Indigenous, and who received prenatal services or gave birth at the Mexican Institute of Social Security (IMSS) facilities experienced a higher prevalence of non-consented care. Being 26 years of age and older, living in a rural setting, experiencing stillbirths in the last five years, having a vaginal delivery, receiving prenatal services at IMSS, or delivering at a private facility were significantly associated with higher odds of reporting non-consented care. CONCLUSION: While a decrease in most of the variations of non-consented care was found, the overall prevalence of non-consented care and, in one of its variations, pressure to get contraceptives, increased at a national and regional level. Our findings suggest the need to enforce current laws and strengthen health systems, paying special attention to the geographical regions and populations that have experienced higher reported cases of this structural problem.
- Published
- 2024
413. Looking ahead: ethical and social challenges of somatic gene therapy for sickle cell disease in Africa.
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Munung, Nchangwi, Nnodu, Obiageli, Moru, Patrick, Kalu, Akpaka, Impouma, Benido, Treadwell, Marsha, and Wonkam, Ambroise
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Anemia ,Sickle Cell ,Genetic Therapy ,Humans ,Africa ,Informed Consent - Abstract
Somatic gene therapy will be one of the most exciting practices of genetic medicine in Africa and is primed to offer a new life for persons living with sickle cell disease (SCD). Recently, successful gene therapy trials for SCD in the USA have sparked a ray of hope within the SCD community in Africa. However, the high cost, estimated to exceed 1.5 million USD, continues to be a major concern for many stakeholders. While affordability is a key global health equity consideration, it is equally important to reflect on other ethical, legal and social issues (ELSIs) that may impact the responsible implementation of gene therapy for SCD in Africa. These include informed consent comprehension, risk of therapeutic misestimation and optimistic bias; priorities for SCD therapy trials; dearth of ethical and regulatory oversight for gene therapy in many African countries; identifying a favourable risk-benefit ratio; criteria for the selection of trial participants; decisional conflict in consent; standards of care; bounded justice; and genetic tourism. Given these ELSIs, we suggest that researchers, pharma, funders, global health agencies, ethics committees, science councils and SCD patient support/advocacy groups should work together to co-develop: (1) patient-centric governance for gene therapy in Africa, (2) public engagement and education materials, and (3) decision making toolkits for trial participants. It is also critical to establish harmonised ethical and regulatory frameworks for gene therapy in Africa, and for global health agencies to accelerate access to basic care for SCD in Africa, while simultaneously strengthening capacity for gene therapy.
- Published
- 2024
414. Juridische aspecten van cardiopulmonale reanimatie
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Daverschot, M., de Vries, W., van den Brink, Geert, editor, Lindsen, Frans, editor, Dieperink, Willem, editor, and van Paassen-Remmerswaal, Chantal, editor
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- 2025
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415. ‘Readiness as opposed to eligibility’- preliminary consensus amongst professionals regarding gender identity assessments employing the DELPHI methodology
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Henrich, Sören
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- 2024
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416. Using a chat-based informed consent tool in large-scale genomic research.
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Savage, Sarah, LoTempio, Jonathan, Smith, Erica, Andrew, E, Mas, Gloria, Kahn-Kirby, Amanda, Délot, Emmanuèle, Cohen, Andrea, Pitsava, Georgia, Nussbaum, Robert, Fusaro, Vincent, Berger, Seth, and Vilain, Eric
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chatbot ,genetic counseling ,genomics ,informed consent ,large-scale research ,Humans ,Prospective Studies ,Informed Consent ,Genomics ,Software ,Communication - Abstract
OBJECTIVE: We implemented a chatbot consent tool to shift the time burden from study staff in support of a national genomics research study. MATERIALS AND METHODS: We created an Institutional Review Board-approved script for automated chat-based consent. We compared data from prospective participants who used the tool or had traditional consent conversations with study staff. RESULTS: Chat-based consent, completed on a users schedule, was shorter than the traditional conversation. This did not lead to a significant change in affirmative consents. Within affirmative consents and declines, more prospective participants completed the chat-based process. A quiz to assess chat-based consent user understanding had a high pass rate with no reported negative experiences. CONCLUSION: Our report shows that a structured script can convey important information while realizing the benefits of automation and burden shifting. Analysis suggests that it may be advantageous to use chatbots to scale this rate-limiting step in large research projects.
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- 2024
417. Ethical considerations in rapid and novel treatments in psychiatry.
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Haeusermann, Tobias and Chiong, Winston
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Humans ,Psychiatry ,Informed Consent ,Mental Disorders - Abstract
New treatment modalities for mental illness are deeply needed, and emerging therapeutic agents such as psychedelics, ketamine, and neuromodulatory technologies have been welcomed by many researchers and patients. These treatment approaches have also been observed to raise novel ethical questions, and to pose new and different versions of familiar ethical questions in clinical treatment and research. We present an overview and introduction to these issues organized around three specific domains of ethical concern: informed consent, the role of expectancy in clinical response, and distributive justice.
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- 2024
418. Clinicians' experiences of obtaining informed consent for research and treatment: a nested qualitative study from Pakistan.
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Memon, Rakhshi, Asif, Muqaddas, Shah, Bushra Ali, Kiran, Tayyeba, Khoso, Ameer B, Tofique, Sehrish, Miah, Jahanara, Ahmad, Ayesha, Chaudhry, Imran, Chaudhry, Nasim, Husain, Nusrat, and Edwards, Sarah J L
- Abstract
Background: Informed consent is considered to be the standard method for respecting the autonomy of individual participants in research and practices and is thought to be based on several conditions: (1) providing information on the purpose of the research or a specific treatment, what it will entail, (2) the participants being mentally competent to understand the information and weigh it in the balance, and (3) the participants to be free from coercion. While there are studies of informed consent in other countries, especially Low and Middle Income Countries (LMICs), this study explored the experiences of clinicians regarding the process of obtaining informed consent to participate in a Randomised Controlled Trial (RCT) in particular and treatment in general in healthcare settings, both general and mental health, specifically focusing on the tension between individualistic concept of autonomy and collectivist values in cultures such as Pakistan. Methods: Qualitative interviews with 20 clinicians from healthcare settings in Pakistan who also served as recruiters in a suicide prevention RCT in Pakistan. The interviews were guided by semi-structured topic guide. All interviews were audio-recorded and transcribed verbatim. Results: The interviews revealed that shared decision making was more morally important than individual autonomy, the role of the family played a dominant part in the consent-taking procedure, the decision of the elder and/or family patriarch took prominence, and that clinician-researchers encountered significant challenges in consent process in Pakistan, while recruiting patients into the trial as well as during routine treatment processes in healthcare settings. Four distinct themes emerged which were (1) Family deciding for patients, (2) Benefits of involving family in consent process, (3) Gender disparity in consent process, (4) Challenges experienced by clinician-researchers during consent process in Pakistan. Conclusions: The concept of consent is generally considered important in many cultures, however, there are two strands of understanding. There seems to be consensus that participant agreement is necessary to protect the participant but with regards to autonomy there are significant cultural differences whether it is the right for autonomy of the individual (individualistic concept) or family, community, or expert authority in other cultures. In Pakistan clinician-researchers sometimes preferred one approach and sometimes the other as they appreciated the interests of the patient to be. [ABSTRACT FROM AUTHOR]
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- 2024
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419. The Effects of Placement and Order on Consent to Data Linkage in a Web survey.
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Burton, Jonathan, Couper, Mick P, and Jäckle, Annette
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We report on an experiment in a supplemental web survey as part of a longitudinal study in the United Kingdom where we ask survey respondents to consent to two forms of data linkage to health records and to consent to be mailed a serology kit. We varied the placement (early, early in context, or late in the survey) and order (linkage first or serology first) of the consent requests. We also examine reasons for consent or non-consent. We find that order of the requests does not make much difference, but making the requests early in the survey significantly increases consent rates over asking them after a series of content-related questions (by 3.4 percentage points) or later in the survey (by 7.2 percentage points). This is consistent with previous research showing that early requests for consent in a survey have a positive effect. The main reason chosen for not consenting related to the personal nature of the information requested. [ABSTRACT FROM AUTHOR]
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- 2024
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420. Survey Consent to Administrative Data Linkage: Five Experiments on Wording and Format.
- Author
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Jäckle, Annette, Burton, Jonathan, Couper, Mick P, Crossley, Thomas F, and Walzenbach, Sandra
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To maximize the value of the data while minimizing respondent burden, survey data are increasingly linked to administrative records. Record linkage often requires the informed consent of survey respondents and failure to obtain consent reduces sample size and may lead to selection bias. Relatively little is known about how best to word and format consent requests in surveys. We conducted a series of experiments in a probability household panel and an online access panel to understand how various features of the design of the consent request can affect informed consent. We experimentally varied: (i) the readability of the consent request, (ii) placement of the consent request in the survey, (iii) consent as default versus the standard opt-in consent question, (iv) offering additional information, and (v) a priming treatment focusing on trust in the data holder. For each experiment, we examine the effects of the treatments on consent rates, objective understanding of the consent request (measured with knowledge test questions), subjective understanding (how well the respondent felt they understood the request), confidence in their decision, response times, and whether they read any of the additional information materials. We find that the default wording and offering additional information do not increase consent rates. Improving the readability of the consent question increases objective understanding but does not increase the consent rate. However, asking for consent early in the survey and priming respondents to consider their trust in the administrative data holder both increase consent rates without negatively affecting understanding of the request. [ABSTRACT FROM AUTHOR]
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- 2024
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421. The Ethical Case for Decentralized Clinical Trials.
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Muyskens, Kathryn, Teo, Ivan Z. Y., Menikoff, Jerry, and Schaefer, G. Owen
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The recent pandemic spurred interest in innovative design for clinical trials. In particular, constraints on the public's ability to gather led to an increase in remote or decentralized clinical trials (DCTs). DCTs present an opportunity to extend the benefits of research to underserved populations, decrease burdens, increase access to trials, and fill knowledge gaps surrounding rare conditions, though they are not without their own unique challenges and risks. These risks are far from irremediable, and the advantages are significant enough to merit attention. There is a scientific and moral case to increase the use of DCTs beyond the context of public health emergencies. [ABSTRACT FROM AUTHOR]
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- 2024
- Full Text
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422. Enabling Demonstrated Consent for Biobanking with Blockchain and Generative AI.
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Barnes, Caspar, Aboy, Mateo Riobo, Minssen, Timo, Allen, Jemima Winifred, Earp, Brian D., Savulescu, Julian, and Mann, Sebastian Porsdam
- Subjects
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GENERATIVE artificial intelligence , *LANGUAGE models , *NON-fungible tokens , *BIOMATERIALS , *BLOCKCHAINS - Abstract
AbstractParticipation in research is supposed to be voluntary and informed. Yet it is difficult to ensure people are adequately informed about the potential uses of their biological materials when they donate samples for future research. We propose a novel consent framework which we call “demonstrated consent” that leverages blockchain technology and generative AI to address this problem. In a demonstrated consent model, each donated sample is associated with a unique non-fungible token (NFT) on a blockchain, which records in its metadata information about the planned and past uses of the sample in research, and is updated with each use of the sample. This information is accessible to a large language model (LLM) customized to present this information in an understandable and interactive manner. Thus, our model uses blockchain and generative AI technologies to track, make available, and explain information regarding planned and past uses of donated samples. [ABSTRACT FROM AUTHOR]
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- 2024
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423. Interventions and strategies for enhancing the consent process in neurosurgery. A systematic review of the literature.
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Elmahdi, Ashraf and Smith, David
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LITERATURE reviews , *PATIENT autonomy , *HEALTH literacy , *VISUAL aids , *DATABASE searching - Abstract
AbstractBackgroundMethodsMain resultsAuthors’ conclusionsThe informed consent process in neurosurgery aims to support patient autonomy and provide comprehensive information for decision-making. However, gaps in communication and understanding between patients and surgeons persist, that need to be addressed. This systematic review examined the interventions and strategies which to enhance the process of consent in neurosurgery.A comprehensive search of databases and relevant sources to identify relevant studies for inclusion. Systematic review of prospective and retrospective studies that assess the effect of interventions which improve the consent process. Data collection and analysis involved independent reviewers assessing eligibility, study quality, and risk of bias. Findings from the included studies were used to write the review.The reviewed identified seven studies notably revealed an educational and interactive consent process involving strategies like booklets, videos, multiple interviews, and interactive websites showed improvements in patient knowledge. Recall of risks decreased over time, and factors like age, education, and timing of consent influenced recall.To maximise informed consent, neurosurgeons should consider various strategies. Tailoring communication-based on patient’s health literacy and treatment knowledge, involving their support system, and using a bullet-point consent form is essential. Utilising multiple modalities like verbal, static, and dynamic visuals improve information retention. Creative and memorable visual aids enhance comprehension. Allowing time for questions and team approach is superior. [ABSTRACT FROM AUTHOR]
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- 2024
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424. The quality and readability of patient information provided by ChatGPT: can AI reliably explain common ENT operations?
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Abou-Abdallah, Michel, Dar, Talib, Mahmudzade, Yasamin, Michaels, Joshua, Talwar, Rishi, and Tornari, Chrysostomos
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- *
CHATGPT , *ARTIFICIAL intelligence , *READABILITY (Literary style) , *JARGON (Terminology) , *ADENOIDECTOMY , *TONSILLECTOMY - Abstract
Purpose: Access to high-quality and comprehensible patient information is crucial. However, information provided by increasingly prevalent Artificial Intelligence tools has not been thoroughly investigated. This study assesses the quality and readability of information from ChatGPT regarding three index ENT operations: tonsillectomy, adenoidectomy, and grommets. Methods: We asked ChatGPT standard and simplified questions. Readability was calculated using Flesch-Kincaid Reading Ease Score (FRES), Flesch-Kincaid Grade Level (FKGL), Gunning Fog Index (GFI) and Simple Measure of Gobbledygook (SMOG) scores. We assessed quality using the DISCERN instrument and compared these with ENT UK patient leaflets. Results: ChatGPT readability was poor, with mean FRES of 38.9 and 55.1 pre- and post-simplification, respectively. Simplified information from ChatGPT was 43.6% more readable (FRES) but scored 11.6% lower for quality. ENT UK patient information readability and quality was consistently higher. Conclusions: ChatGPT can simplify information at the expense of quality, resulting in shorter answers with important omissions. Limitations in knowledge and insight curb its reliability for healthcare information. Patients should use reputable sources from professional organisations alongside clear communication with their clinicians for well-informed consent and making decisions. [ABSTRACT FROM AUTHOR]
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- 2024
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425. The pregnancy rescue case versus typical abortion.
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Gillham, Alex R
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- *
ABORTION laws , *HEALTH literacy , *ETHICS , *INFORMED consent (Medical law) , *ABORTION , *WOMEN'S rights - Abstract
Hendricks' pregnancy rescue case (PRC) tries to show that abortion is typically morally wrong. I argue here that there are at least two morally relevant differences between the abortion in PRC and the typical abortion so that the latter isn't morally wrong even if the former is morally wrong. I develop five modifications to PRC to show that these two differences are morally important. First, in PRC we don't know whether the person gives informed consent to the abortion, nor does the medical professional who will perform the abortion, and so the abortion can't be performed because the patient gives informed consent to it. Second, not preventing the death of the fetus in PRC brings about the death of an additional fetus gestating in a separate pregnant person, whereas most abortions don't entail the termination of another's pregnancy. [ABSTRACT FROM AUTHOR]
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- 2024
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426. Impact of Educational Videos on Patient Understanding of Interventional Radiology Procedures.
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Makary, Mina S., Jacob, Connor C., Boggs, Zac, Brankovic, Ryan, Paradiso, Michela, and Regalado, Luis
- Abstract
Under-awareness of Interventional Radiology (IR) care by the public has been reported. The aim of this study is to evaluate the impact of educational videos to facilitate better patient understanding during the informed consent process. Educational videos for six common IR procedures including chemoembolization, radioembolization, ablation, tunneled central venous catheter placement, port placement, and port removal were developed for educating patients in the pre-procedural setting. One hundred and eighty patients referred to a tertiary academic institution were randomly selected to participate, including 30 patients per procedure type. Anonymous seven question, five-point Likert-scale assessments were administered to the participants before and after engaging with the videos. The survey evaluated patients' perceived understanding of IR procedures and satisfaction with the videos as educational tools. One hundred and eighty patients completed the survey. Comparing post-video to pre-video ratings, there was an increase in patients' understanding of the involved anatomy (4.5 vs 3.3; p < 0.01), understanding of procedure benefits (4.6 vs 3.7; p < 0.01), understanding of procedural risks (4.5 vs 3.3; p < 0.01), understanding of procedural alternatives (3.4 vs 2.7; p < 0.01), and overall procedural understanding (4.7 vs 3.4; p < 0.01). Additionally, patients had a positive impression of the videos with a mean overall satisfaction rating of the video-assisted explanation of 4.80. A patient-centric video-assisted informed consent for IR procedures enhances patients' understanding and results in high patient satisfaction. [ABSTRACT FROM AUTHOR]
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- 2024
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427. Unproven stem cell therapies: an evaluation of patients’ capacity to give informed consent.
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Langford, Laura and Foong, Patrick
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INFORMED consent (Medical law) , *STEM cell treatment , *REGENERATIVE medicine , *STEM cells , *THERAPEUTICS - Abstract
Capitalising on the hype surrounding regenerative medicine, there are clinics worldwide marketing unproven stem cell-based therapies to patients. Some patients have travelled overseas to access treatments they believe are safe and effective. This practice, known as stem cell tourism, could result in adverse effects in some patients. This paper seeks to examine how the industry could threaten the validity of the patient's informed consent. The vulnerable groups include adults, minors and incompetent patients. Since patients are exposed to exaggerated claims and inaccurate information, this article argues that each cohort may not truly consent to such therapies. While each group hopes to obtain a miracle cure, the reality is that these purported medical treatments may not enable patients to give their informed consent, which thereby inhibits good decision-making. Accordingly, states could restrict patients’ access to unproven stem cell-based therapies to control the problem. This paper illustrates how the regulatory framework in countries such as Australia and the United States (U.S.) has allowed the industry to thrive. Recommendations on how states can take a restrictive stance against this complex phenomenon are proposed. [ABSTRACT FROM AUTHOR]
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- 2024
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428. Enhancing patient understanding in obstetrics: The role of generative AI in simplifying informed consent for labor induction with oxytocin.
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Grünebaum, Amos, Dudenhausen, Joachim, and Chervenak, Frank A.
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- *
GENERATIVE artificial intelligence , *INDUCED labor (Obstetrics) , *READABILITY (Literary style) , *HEALTH literacy , *OXYTOCIN - Abstract
Informed consent is a cornerstone of ethical medical practice, particularly in obstetrics where procedures like labor induction carry significant risks and require clear patient understanding. Despite legal mandates for patient materials to be accessible, many consent forms remain too complex, resulting in patient confusion and dissatisfaction. This study explores the use of Generative Artificial Intelligence (GAI) to simplify informed consent for labor induction with oxytocin, ensuring content is both medically accurate and comprehensible at an 8th-grade readability level. GAI-generated consent forms streamline the process, automatically tailoring content to meet readability standards while retaining essential details such as the procedure’s nature, risks, benefits, and alternatives. Through iterative prompts and expert refinement, the AI produces clear, patient-friendly language that bridges the gap between medical jargon and patient comprehension. Flesch Reading Ease scores show improved readability, meeting recommended levels for health literacy. GAI has the potential to revolutionize healthcare communication by enhancing patient understanding, promoting shared decision-making, and improving satisfaction with the consent process. However, human oversight remains critical to ensure that AI-generated content adheres to legal and ethical standards. This case study demonstrates that GAI can be an effective tool in creating accessible, standardized, yet personalized consent documents, contributing to better-informed patients and potentially reducing malpractice claims. [ABSTRACT FROM AUTHOR]
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- 2024
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429. Attitudes and awareness in autonomous decision on medical treatment or inclusion in clinical trials amongst Slovenian adolescents: an online survey.
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Černelč, Maks Lenart, Erčulj, Vanja, and Grosek, Štefan
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YOUNG adults ,AGE groups ,MEDICAL ethics ,INFORMED consent (Medical law) ,MEDICAL personnel - Abstract
Background: In Europe and elsewhere in the world, activities are taking place to improve the awareness of children and adolescents (hereinafter: adolescents) regarding their rights and obligations in autonomous decision-making about their own medical treatment and participation in clinical research. Methods: The cross-sectional survey of adolescents was carried out using an anonymous online questionnaire. We obtained consent from the Commission of the Republic of Slovenia for Medical Ethics. Participating young people were invited through the network of primary and secondary schools, the Society of Dystrophy of Slovenia and through the dissemination of electronic messages. The online questionnaire was open from April 25 to May 6, 2023. Young people aged 13 to 20 joined the survey. The association between several factors and awareness of the minimum age limit was tested by univariate logistic regression. All statistical testing was performed at a significance level of 0.05. Results: The responses of 458 respondents were analysed, of which 281 were male. Only 8.3% of participating adolescents knew the age limit set by law for autonomous decision-making about medical treatment at 15 years old. Most answered that a medical institution should inform them about their rights (62.4%). Only 5.02% responded that they do not need their parents' consent when making decisions; 2.6% of respondents answered that they autonomously decided to undergo treatment without their parents' knowledge. The majority obtained information about treatment from a doctor (more than 70%); 42.8% were in favour of new forms of treatment, especially chronic patients (more than 70%); 44.8% had already heard about clinical research, most of them through the media (55.4%); 70% of the respondents answered correctly about making an autonomous decision about participation in research at the age of 18. About three-quarters (75.6%) of respondents who had heard of clinical research believe that an individual should be paid for participating. Conclusions: Our research showed insufficient awareness of the age limit of adolescents regarding medical treatment decisions and clinical research. The prevailing view is that health professionals should inform young people more about their rights. Most adolescents believe they should be paid to participate in clinical research. [ABSTRACT FROM AUTHOR]
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- 2024
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430. Introduction of an Educational Video to Enhance the Informed Consent Process in Postoperative Radiation Therapy of Breast Cancer Patients.
- Author
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Vorbach, Samuel M., Pointner, Martin, Lehmann, Jens, Mangesius, Julian, Hart, Tilmann, Gstir, Claudia, Rändler, Theresa, Seppi, Thomas, Ganswindt, Ute, and Kollotzek, Siegfried
- Subjects
- *
BREAST tumor treatment , *HEALTH literacy , *EDUCATIONAL outcomes , *STATISTICAL sampling , *QUESTIONNAIRES , *HEALTH , *CANCER patients , *INFORMATION resources , *RANDOMIZED controlled trials , *INFORMED consent (Medical law) , *DELPHI method , *PATIENT satisfaction , *VIDEO recording , *COGNITION , *MEDICAL referrals , *VERBAL behavior - Abstract
Simple Summary: Our research addresses the challenges in informed consent in postoperative radiotherapy for breast cancer. Traditional consent processes often rely on verbal explanations of sometimes complicated treatment options, which can overwhelm patients and lead to misunderstandings. To improve this fundamental process, we developed an educational video using a modified Delphi method, incorporating input from experts and former patients to ensure comprehensive and patient-friendly content. With our study, we demonstrated that this video, if viewed by breast cancer patients prior to their subsequent verbal consultation, can significantly improve patients' understanding and speed up the informed consent process without compromising patients' satisfaction. To conclude, this innovation supports a more comprehensive and efficient informed consent process, which is in line with evolving healthcare practices that prioritise patient engagement and education. Background/Objectives: Informed consent is crucial in medical practice, especially for complex treatments such as postoperative radiotherapy for patients with breast cancer. Conventional consent procedures are often based on verbal declarations with a highly condensed but nevertheless large amount of information, which can exceed the recording capacity of patients and lead to misunderstandings. The aim of this study was to develop and test an educational video on breast cancer patients to enhance the informed consent process by improving patients' understanding and reducing the duration of the subsequent consultation. Methods: The educational video was created after the underlying content was determined by a modified Delphi method in which a panellist of radiation oncologists, nurses, radiation therapists, and former patients participated in successive rounds of topic scoring. After achieving content consent, the video included 19 items to cover key aspects of postoperative radiotherapy in a patient-friendly manner. Fifty breast cancer patients scheduled for postoperative radiotherapy were randomised to watch the video prior to their verbal consultation (n = 25) or to the control group participating in the traditional informed consent process only (n = 25). The duration of the informed consent processes in both arms was recorded. To assess the educational effect of the video, a multiple-choice test was created. In addition, patients' satisfaction was recorded using a separate questionnaire. Both questionnaires were completed by the patients one to two hours after signing the consent form. Results: The patients in the video group evidenced significantly higher knowledge scores than those who received standard verbal explanations (median number of correct answers 9 vs. 8 out of 10, p = 0.0039). The whole informed consent process was also completed faster in the video group (mean duration 34.7 vs. 46.2 min, p < 0.001). Median satisfaction scores were high in both groups (34 vs. 33 out of 35 points), with no significant differences observed (p > 0.05). Conclusion: The educational video effectively improved patient understanding and streamlined the informed consent process without compromising patients' satisfaction. This approach also helps to standardise the delivery of complex medical information, and it can also be adapted to improve the informed consent process for other cancer treatments. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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- View/download PDF
431. Virtual Reality-Assisted Informed Consent for Anesthesia: A Prospective and Randomized Proof-of-Concept Study.
- Author
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Simon, Sebastian, Opfermann, Philipp, Hofstaetter, Jochen G., and Marhofer, Peter
- Subjects
- *
PATIENT satisfaction , *HEAD-mounted displays , *VIRTUAL communications , *VIRTUAL reality , *ORTHOPEDIC surgery - Abstract
Background/Objectives: Informed consent for anesthesia poses both legal challenges and problems of understandable communication. Fulfilling all the requirements through anesthesiologists directly interacting with patients is a time- and staff-consuming strategy. Given today's smart technologies, notably including virtual reality (VR), we explored in a prospective randomized study whether 'VR-assisted informed consent' could improve this situation. Methods: Fifty patients scheduled for orthopedic surgery were randomized. In the control group, informed consent was obtained via patient–specialist dialogs only. The patients in the study group, wearing a head-mounted display, watched an 8 min immersive 3D movie with the standard explanations of general anesthesia, followed by a patient–specialist dialog to address open questions. The time spent on the dialogs in both groups was evaluated as the primary outcome variable. As secondary variables, we analyzed both a three-item Likert scale on patient satisfaction with the VR experience and cost differences between both groups. Results: Patient–specialist dialogs were carried on for median (IQR) durations of 93 (20–182) seconds in the study group versus 665 (261–829) seconds in the control group (p < 0.001). All the patients exposed to VR rated this experience as favorable (87.5%) or neutral (12.5%). Based on anesthesiologists' incomes in the US and UK, our approach would reduce the staff expenditure for each patient–specialist dialog by median amounts of USD ≈40 or ≈11, respectively (2 × p < 0.001). Conclusions: 'VR-assisted informed consent' for anesthesia is well accepted by patients and reduces the time requirements for patient–specialist dialogs, thus pointing out a potential avenue towards increasing the work-time efficiency of anesthesiologists. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
432. Ethical challenges in qualitative sociology: a systematic literature review.
- Author
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Scheytt, Carla and Pflüger, Jessica
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LITERATURE reviews ,RESEARCH personnel ,REFLEXIVITY ,SOCIOLOGISTS ,SOCIOLOGY ,RESEARCH ethics - Abstract
Qualitative researchers often encounter ethical challenges during their research process. Due to the large number of papers in which researchers reflect on specific and various ethical challenges within their projects, it proves difficult to keep track of them. To capture these reflexive practices, we conducted a literature review of 72 papers in sociology. Our review shows who reflects on research ethics and when and where such reflections occur. We identify 11 ethical issues that sociologists reflect on. Some issues address the challenges of implementing established ethical principles, such as (1) informed consent, (2) voluntary participation, (3) avoiding harm, (4) anonymization, and (5) confidentiality. Others go beyond these principles and refer to (6) the relationship between researchers and participants, (7) power asymmetries, (8) protecting yourself as a researcher, (9) deviant actions, (10) covert research, and (11) leaving the field. Our findings help researchers gain an overview of ethical challenges, enhancing their reflexivity. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
433. Capacity to consent: a scoping review of youth decision-making capacity for gender-affirming care.
- Author
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Marino, Loren G., Boguszewski, Katherine E., Stephens, Haley F., and Taylor, Julia F.
- Subjects
MENTAL health services ,SEXUAL minorities ,INFORMED consent (Medical law) ,GENDER affirming care ,TRANSGENDER people - Abstract
Background: Transgender and gender expansive (TGE) youth often seek a variety of gender-affirming healthcare services, including pubertal suppression and hormone therapy requiring that TGE youth and their parents participate in informed consent and decision making. While youth must demonstrate the ability to understand and appreciate treatment options, risks, benefits, and alternatives as well as make and express a treatment choice, standardized approaches to assess the capacity of TGE youth to consent or assent in clinical practice are not routinely used. This scoping review identified the currently available data regarding adolescent capacity to consent to gender-affirming medical treatments. Methods: Articles relevant to assessing adolescent capacity for clinical decision-making were identified using OVID Medline, Web of Science, and PubMed. Articles were reviewed and thematically analyzed. Results: Eight relevant articles were identified using three tools for measuring adolescent clinical decision-making capacity: Measure of Understanding, Measure of Competence, and MacArthur Competence Assessment Tool (MacCAT). These studies explored hypothetical treatment decisions, mental health treatment decisions, HIV treatment decisions, genetic testing decisions, and gender-affirming medical decisions. Only one study specifically examines the capacity of TGE youth to consent to medical treatments. Age was correlated with capacity in most, but not all studies. Other studies found cognitive measures (IQ, literacy, numeracy) may impact important aspects of capacity (understanding and reasoning). Conclusions: For clinicians caring for TGE youth, tools such as the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) may prove useful, in conjunction with consideration of youth developmental abilities and utilization of shared decision-making practices. A standardized, collaborative approach to assessing TGE youth capacity would benefit TGE youth and their parents, and allow clinicians to more easily resolve ethical concerns. [ABSTRACT FROM AUTHOR]
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- 2024
- Full Text
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434. Practices and attitudes of herbalists regarding informed consent in Uganda: a qualitative study.
- Author
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Nalubega, Sumayiya, Kutyabami, Paul, Twimukye, Adelline, Kaawa-Mafigiri, David, and Sewankambo, Nelson. K.
- Subjects
INFORMED consent (Medical law) ,MEDICAL ethics ,INTELLECTUAL property ,HERBAL medicine ,PATIENT autonomy - Abstract
Background: Informed consent (IC) is a fundamental principle in medical ethics that upholds respect for patient autonomy. Although widely applied in healthcare, its feasibility and implementation in herbal medicine have been underexplored. This study therefore aimed to explore the practices and attitudes of herbalists regarding informed consent. Methods: To achieve these objectives, a qualitative cross-sectional study was conducted from June to December 2020. Twenty-one in-depth interviews with herbalists and four key informant interviews with leaders of the different traditional medicine organizations were conducted. The data were analyzed thematically using NVivo version 12 software. Results: Sixteen of the twenty-one participants acquired oral herbal medicine knowledge from their relatives. Although a positive inclination toward obtaining IC was evident, the focus was on disclosing basic information. Discussions of alternative treatments and herbal specifics were less frequent. Disease management decisions often involve shared responsibility within families or societies. Documented IC procedures are rare among herbalists, who deem consent forms unnecessary, although they recognize the potential benefits of IC in fostering trust and professionalism. Challenges hindering IC implementation included regulatory gaps, inadequate skills, and the absence of mechanisms to protect the intellectual property rights of herbal medicine. Conclusion: This study illuminates how educational, cultural, familial, and regulatory factors influence herbalists' practices and attitudes toward informed consent. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
435. EL USO DEL CONSENTIMIENTO INFORMADO EN LA PRÁCTICA ODONTOLÓGICA EN EL SUR DEL PERÚ.
- Author
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Quenaya Garay, Astridh Semiramis, de La Torre, Ulises Massino Peñaloza, Salazar-Paco, Olga Elizabeth, Cáceres, Alejandro Aldana, and Jiménez, Omar Pezo
- Subjects
- *
CONVENIENCE sampling (Statistics) , *PRACTICE of dentistry , *DENTISTS , *PROFESSIONAL practice , *QUANTITATIVE research - Abstract
The objective of this research is to determine how informed consent is used in dental practice in southern Peru in the year 2023. The methodological design adopts a descriptive level with a mixed approach that is divided into two stages: The first consisted of a qualitative theoretical-analytical-rational analysis, followed by a subsequent empirical analysis with a quantitative, descriptive and cross-sectional approach. The study was carried out in a population of dentists who practice the dental profession in southern Peru in the year 2023 with a non-probabilistic convenience sample of 131 dentists. The main results were that the use of informed consent (14.5%) states that they do not use it in their daily consultation and (59.5%) use it in an erroneous way, due to different factors that influence this procedure and that the non-use of informed consent in its highest percentage arguing "lack of time" on the part of dentists It was concluded that there is a high rate of dental professionals who do not use informed consent in their professional practice, even more so that there is a high percentage that does not use consent correctly reported as an ethical-legal document. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
436. Examining Introduction of E-consent in the Neurosurgical Caseload: Understanding the Barriers to Implementation.
- Author
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Ramsay, Daniele S.C., Rathod, Virensinh, Rashed, Sami, Dassanayake, Sohani, Thavarajasingam, Santhosh, Mendoza, Nigel, and Rezaei Haddad, Ali
- Subjects
- *
COMPARATIVE studies , *NEUROSURGERY , *MEDICAL personnel , *ACQUISITION of data , *RESPONDENTS - Abstract
To evaluate current usage and barriers of electronic consent (e-consent) implementation in neurosurgical practice. E-consent forms provide an alternative method for conducting the informed consent (IC) procedure. IC requires an ability to understand, retain, weigh up, and communicate decisions regarding the proposed procedure. Currently, e-consent has shown promise as a method of improving IC, yet barriers to implementation exist. A comparative analysis regarding procedural and consent data was collected over six months in 2 neurosurgical centers with elective and emergency caseloads. These were evaluated for changes over time following e-consent introduction. Clinicians were surveyed for their experience using of e-consenting to understand the barriers to implementation. Over one half (55.6%) of neurosurgical procedures made use of e-consent for IC. Lower rates of e-consent were used in trauma related procedures (38.38%) as compared to elective procedures. This did not increase significantly over the study period. Positive clinician survey feedback indicated e-consenting reduces the time required to perform IC, with 50% of respondents strongly agreeing. Barriers to implementation were reported on free-text entry pertaining largely to difficulties in emergency situations due to form complexity. The inability to create and edit templates for personalized e-consent delivery was a further limitation. Despite the advantages conferred by e-consent for the administration of IC in neurosurgical procedures, reflected in our survey data, there remains limited use of the technology. Limitations remain relating to ease of access and complexity of use in trauma scenarios. [ABSTRACT FROM AUTHOR]
- Published
- 2024
- Full Text
- View/download PDF
437. Parental views on prospective consent: Experience from a pilot randomised trial recruiting extremely preterm infants during the perinatal period.
- Author
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Skelton, Hannah, Goyen, Traci‐Anne, Viola, Patricia, Marceau, James, D'Cruz, Daphne, Maheshwari, Rajesh, Shah, Dharmesh, Edney, Bronwyn, Luig, Melissa, and Jani, Pranav R
- Subjects
- *
PARENT attitudes , *PREMATURE infants , *PERINATAL period , *CLINICAL trials , *INFANTS - Abstract
Aim: To explore parental perceptions of the consenting process and understanding of the study in a pilot randomised controlled trial wherein extremely premature infants (<29 weeks' gestation) were recruited either antenatally or by 4 h of life. Methods: We prospectively surveyed parents who had consented, declined consent or were eligible infants in the Positioning Preterm Infants for Neuroprotection study, a low‐risk intervention study in the first 72 h of life. Structured interview questions explored the process and acceptability of the consenting approach by the parents and their knowledge of the study. Additional comments made by the parents were transcribed verbatim. Results: Sixty‐two parents participated in the surveys; of those, 41 had provided their consent, 8 declined consent and 13 were parents of missed eligible infants. Overall, most parents reported they understood the study well before providing their consent and approaching them for consenting did not create a burden for them. A verbal explanation of the study by the study team, especially by the medical practitioners, was viewed as beneficial. Where consent was obtained in the birthing unit (imminent births and within 4 h of birthing), it was suggested that the 4‐h period for obtaining post‐natal consent may be too short. A deferred consent with a follow‐up opportunity for obtaining informed consent could be a suitable alternative. Conclusion: Parents found the consenting process acceptable and indicated they had sufficient understanding of the study to provide an informed consent. Deferred consent should be explored for future, low‐risk intervention studies as an alternative to prospective consent where extremely preterm infants need to be recruited in the immediate neonatal period. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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438. The continuum of rapport: Ethical tensions in qualitative interviews with vulnerable participants.
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Schmid, Evi, Garrels, Veerle, and Skåland, Børge
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WORK , *EMPATHY , *SOCIAL sciences , *PROFESSIONAL ethics , *QUALITATIVE research , *PSYCHOLOGICAL distress , *AT-risk people , *INTERVIEWING , *HUMAN research subjects , *STATISTICAL sampling , *PRIVACY , *PARTICIPANT-researcher relationships , *CONFIDENCE , *UNCERTAINTY , *THEMATIC analysis , *INTELLECTUAL disabilities , *INFORMED consent (Medical law) , *PSYCHOLOGICAL stress , *RESEARCH methodology , *INTERPERSONAL relations , *SOCIAL boundaries , *EXPERIENTIAL learning , *MEDICAL ethics , *WELL-being - Abstract
Rapport is generally considered an essential component of successful interviewing, where participants are willing to share and divulge information. The present paper contributes to the research on rapport in qualitative interviewing by exploring ethical tensions that researchers may experience when conducting qualitative interviews with vulnerable participants. The analysis is based on semi-structured interviews with nine researchers from various fields within social sciences who had extensive experience in doing research with diverse vulnerable groups. We identified six ethical tensions related to building rapport with people in vulnerable life situations that cover issues concerning both too little and too much rapport. Findings illustrate that rapport as the 'ideal' for the researcher-participant relationship may need nuancing. The study concludes that researchers undertaking qualitative interviews on sensitive topics need to have a conscious awareness of ethical tensions that may arise when building rapport with their participants [ABSTRACT FROM AUTHOR]
- Published
- 2024
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439. COVID-19 human challenge trials and randomized controlled trials: lessons for the next pandemic.
- Author
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Weijer, Charles
- Subjects
- *
COVID-19 treatment , *COVID-19 pandemic , *VACCINE development , *VACCINE trials , *PHYSICIANS , *INFORMED consent (Medical law) - Abstract
The COVID-19 pandemic touched off an unprecedented search for vaccines and treatments. Without question, the development of vaccines to prevent COVID-19 was an enormous scientific accomplishment. Further, the RECOVERY and Solidarity trials identified effective treatments for COVID-19. But all was not success. The urgent need for COVID-19 prevention and treatment fueled an embrace of risks—to research participants and to the reliability of the science itself—as allegedly necessary costs to speed scientific progress. Scientists and (even) ethicists supported overturning longstanding norms protecting healthy volunteers in human challenge trials to speed vaccine development, but these trials led to no vaccines. Physicians, with the approval of research ethics committees, designed hundreds of unblinded, single-center clinical trials at high risk of bias to speed the identification of new treatments. But these clinical trials led to no treatments. The lesson for future pandemics is that the acceptance of greater risks to participants or science does not reliably lead to progress. We are better served by science that upholds the highest ethical and methodological standards. [ABSTRACT FROM AUTHOR]
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- 2024
- Full Text
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440. Navigating ethical challenges in online wildlife trade research.
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Morcatty, Thais Q., Su, Shan, Siriwat, Penthai, Andersson, Astrid Alex, Atoussi, Sadek, Feddema, Kim, Henriques, Sergio, Janssen, Jordi, Karve, Anushri, Pytka, Jennifer, Thompson, Ruth M., Nijman, Vincent, Wright, Joss, and Roberts, David L.
- Subjects
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SCIENTIFIC literature , *INTERNET privacy , *WILD animal trade , *RIGHT of privacy , *RESEARCH personnel , *METADATA - Abstract
The surge in internet accessibility has transformed wildlife trade by facilitating the acquisition of wildlife through online platforms. This scenario presents unique ethical challenges for researchers, as traditional ethical frameworks for in‐person research cannot be readily applied to the online realm. Currently, there is a lack of clearly defined guidelines for appropriate ethical procedures when conducting online wildlife trade (OWT) research. In response to this, we consulted the scientific literature on ethical considerations in online research and examined existing guidelines established by professional societies and ethical boards. Based on these documents, we present a set of recommendations that can inform the development of ethically responsible OWT research. Key ethical challenges in designing and executing OWT research include the violation of privacy rights, defining subjects and illegality, and the risk of misinterpretation or posing risks to participants when sharing data. Potential solutions include considering participants' expectations of privacy, defining when participants are authors versus subjects, understanding the legal and cultural context, minimizing data collection, ensuring anonymization, and removing metadata. Best practices also involve being culturally sensitive when analyzing and reporting findings. Adhering to these guidelines can help mitigate potential pitfalls and provides valuable insights to editors, researchers, and ethical review boards, enabling them to conduct scientifically rigorous and ethically responsible OWT research to advance this growing field. [ABSTRACT FROM AUTHOR]
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- 2024
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441. An enquiry into the usefulness of an information portal for Deaf and hard of hearing people prior to x-ray examinations and improvement ideas.
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Reynolds, R. and Davis, M.
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Healthcare information resources are extremely limited currently in Irish Sign Language and studies of the preferred methods of gaining information in the Deaf and hard of hearing (DHH) community are scarce. This study aims to explore the opinions of DHH people on an information portal designed for a radiology department, taking account of their preferred methods of gaining information and past experiences of participants that may be addressed by a portal of this kind. These opinions inform the overall objective of creating a template for further improvements to the portal. An information portal containing what to expect before, during and after a chest x-ray examination was created. Ethical approval was granted to interview 11 DHH adults via zoom and in person to explore their opinions of an information portal's value prior to chest x-ray examinations. The preferred media type for obtaining information prior to x-ray examinations was also explored. Interview methods reflected the heterogeneity of DHH people's communication methods. Transcripts of the study were analysed using qualitative thematic analysis. The resultant themes from the study were; positives of the information portal as it stands, feelings, pitfalls of the information portal, accessibility considerations, d/Deaf awareness, previous issues that may be helped by the information portal, improvement suggestions and further developments. The majority of participants preferred the subtitled video over other media types. Participants felt they would have been better prepared for their x-ray if they had used the information portal prior, and it would have increased their ability to give informed consent. Participants highlighted experiences of audism in radiology departments and cited the need for healthcare worker's deaf awareness to be improved. Improvements to the information portal were provided by participants. The idea of this information portal was supported by the participants. Increased deaf awareness particularly in healthcare workers will improve this resource and improve patient experiences in radiology. Implications for practice: A national policy is needed to implement accessible information in radiology departments to improve the provision of medical autonomy. This policy should be supported by ISL interpreters. [ABSTRACT FROM AUTHOR]
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- 2024
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442. HUMAN RIGHTS IN SCIENCE: OBSERVATIONS FROM ETHICS COMMITTEES ON MEDICAL RESEARCH PROTOCOLS.
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Vasco-Morales, Santiago, Vasco-Toapanta, Cristhian, Guanoluisa-Vasco, Alisson, Vasco-Toapanta, Gabriel, and Toapanta-Pinta, Paola
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MEDICAL research ethics ,RESEARCH integrity ,RESEARCH protocols ,JUSTICE ,ANTHROPOSOPHY - Abstract
Copyright of Environmental & Social Management Journal / Revista de Gestão Social e Ambiental is the property of Environmental & Social Management Journal and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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- 2024
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443. Neue Empfehlungen zur palliativen Sedierung.
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Surges, Séverine Marie, Brunsch, Holger, Przyborek, Marta, Jaspers, Birgit, and Radbruch, Lukas
- Abstract
Copyright of Der Schmerz is the property of Springer Nature and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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- 2024
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444. Partnering with the woman who declines recommended maternity care: Development of a statewide guideline in Queensland, Australia.
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Jenkinson, Bec, Gray, Lyndel, Sketcher‐Baker, Kirstine, and Kimble, Rebecca
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Background Aim Materials and Methods Results Conclusion Choice, a fundamental pillar of woman‐centred maternity care, depends in part on the right to decline recommended care. While professional guidance for midwives and obstetricians emphasises informed consent and respect for women's autonomy, there is little guidance available to clinicians or women about how to navigate maternity care in the context of refusal.To describe the process and outcomes of co‐designing resources to support partnership between the woman who declines recommended maternity care and the clinicians and health services who provide her care.Following a participatory co‐design process involving consumer representatives, obstetricians, midwives, maternal fetal medicine specialists, neonatologists, health service executives, and legal and ethics experts, implementation of the resources was trialled in seven Queensland Health services using Improvement Science's Plan‐Do‐Study‐Act cycles.Resources for Partnering with the woman who declines recommended maternity care have now been implemented statewide, in Queensland, including a guideline, two consumer information brochures (available in 11 languages), clinical form, flowcharts, consumer video, clinician education, and culturally capable First Nations resources. Central to these resources is an innovative shared clinical form, that is accessible online, may be initiated and carried by the woman, and where she can document her perspective as part of the clinical notes.Queensland is the first Australian jurisdiction, and perhaps internationally, to formally establish this kind of guidance in clinical practice. Such guidance is identified as an enabler of choice in the national Australian strategy Woman‐centred care: Strategic directions for Australian maternity services. [ABSTRACT FROM AUTHOR]
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- 2024
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445. Researchers experience and views on participants' comprehension of informed consent in clinical trials in Malawi: a descriptive qualitative study.
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Kazembe, Dorothy Maxwell, Woldeamanuel, Yimtubezinash, and Abay, Solomon Mequanente
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RESEARCH personnel ,RESEARCH ethics ,PARTICIPANT observation ,CLINICAL trials ,RESEARCH institutes - Abstract
Background: Informed consent is the cornerstone of research ethics. One of its goals is that participants enter research with an understanding of what their participation entails. This paper is a study on how researchers understand the informed consent process. Previous studies have looked at this topic from a research participant perspective. However, few studies focus on the perspectives of the researchers. Therefore, this is an important paper that highlights an important issue (informed consent) from the perspective of those who administer it during research. Methods: In-depth interviews were conducted with 18 researchers from 3 different research centers in Malawi working in clinical trials. The data was analyzed using open code utilizing the thematic approach to qualitative data. Results: This study identified that researchers have good awareness of the role of informed consent, how important it is for participants to understand the given information and ways to adjust their practice accordingly when obtaining it in order to enhance participant understanding. According to the research staff, most participants do not really understand all the concepts of the study at the initial visit, they gain more understanding during subsequent visits. It was emphasized that the best method of facilitating informed consent is reading the informed consent to the participant, thus a face-to-face conversation. Long and complex informed consent was identified as one of the barriers to participant understanding of the informed consent. Shortening the informed consent form and having additional conversation with the participants was suggested as one way of improving participant comprehension. Conclusion: Most of the participants understand much of the information during subsequent visits as you keep reminding them since informed consent is an ongoing process. Existing relationship or trust between a participant and a researcher, may influence participants' decision and misguide their understanding on the purpose of the study. Adequate time should be allocated to informed consent discussions. Shortening the informed consent forms and having additional conversations with potential participants may help improve their understanding. [ABSTRACT FROM AUTHOR]
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- 2024
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446. Beyond neural data: Cognitive biometrics and mental privacy.
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Magee, Patrick, Ienca, Marcello, and Farahany, Nita
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BIOMETRIC identification , *RIGHT of privacy , *DATA encryption , *BRAIN-computer interfaces , *ARTIFICIAL intelligence - Abstract
Innovations in wearable technology and artificial intelligence have enabled consumer devices to process and transmit data about human mental states (cognitive, affective, and conative) through what this paper refers to as "cognitive biometrics." Devices such as brain-computer interfaces, extended reality headsets, and fitness wearables offer significant benefits in health, wellness, and entertainment through the collection and processing and cognitive biometric data. However, they also pose unique risks to mental privacy due to their ability to infer sensitive information about individuals. This paper challenges the current approach to protecting individuals through legal protections for "neural data" and advocates for a more expansive legal and industry framework, as recently reflected in the draft UNESCO Recommendation on the Ethics of Neurotechnology, to holistically address both neural and cognitive biometric data. Incorporating this broader and more inclusive approach into legislation and product design can facilitate responsible innovation while safeguarding individuals' mental privacy. Biometric data relating to human cognitive, affective, and conative states ("cognitive biometrics") are not adequately protected under existing privacy laws. The authors argue for an expansive approach that would treat neural and cognitive biometric data holistically as categories of "sensitive data" and provide them with analogous privacy protections. [ABSTRACT FROM AUTHOR]
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- 2024
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447. Informed consent and coercion in recruitment advertisements for oocyte donors.
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Lake, Ruby, Berzansky, Isa, Lanes, Andrea, Srouji, Serene, Ginsburg, Elizabeth, and Insogna, Iris
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OVUM donation , *MONETARY incentives , *REPRODUCTIVE health , *FERTILIZATION in vitro , *RISK exposure - Abstract
Background: As the use of donor eggs for in vitro treatment has increased, both medically affiliated and private donor egg agencies have turned to online advertisements to recruit donors. The American Society for Reproductive Medicine provides recommendations encouraging ethical recruitment of donors, however there is no formal regulation for the informed consent process for egg donor recruitment and compensation. Underrepresentation of risks and targeted financial incentives may pose a risk to the informed consent process. Methods: Data from online advertisements for egg donors active between January 1 - August 31, 2020, were collected to analyze content related to risks, Covid-19 precautions, donor payment, and desired donor characteristics. Advertisements for egg donors on Google, Craigslist, and social media were analyzed. Primary outcomes included the mention of the risks of egg donation, including the risk of Covid-19 exposure, in donor egg advertisements. Secondary outcomes included language targeting specific donor characteristics and financial compensation. Results: 103 advertisements were included. 35.9% (37/103) of advertisements mentioned some risk of the egg donation process, and 18.5% (19/103) mentioned risks or precautions related to Covid-19 exposure. Of advertisements for private donor egg agencies, 40.7% (24/59) mentioned any risk, compared to 29.6% (13/44) of medically affiliated egg donation programs; the difference was not statistically significant (p-value = 0.24). Agencies targeting students and donors of a specific race were more likely to offer payments over $10,000 for an egg donation cycle. Among advertisements offering over $20,000 for donor compensation, 72.7% (8/11) recruited women under the age of 21. Conclusion: Egg donor recruitment advertisements, for both medically affiliated programs and private agencies, were unlikely to mention risks including the risk of exposure to Covid-19. Non-medically affiliated private donor egg agencies were more likely to violate multiple American Society for Reproductive Medicine ethics guidelines, including offering higher than average compensation, and recruiting donors from young and vulnerable populations. [ABSTRACT FROM AUTHOR]
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- 2024
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448. Incidental findings in research brain MRI: Definition, prevalence and ethical implications.
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de Jong, Kenneth J, Poon, Emma, Foo, Michelle, Maingard, Julian, Kok, Hong Kuan, Barras, Christen, Yazdabadi, Anousha, Shaygi, Benham, Fitt, Gregory J, Egan, Gary, Brooks, Mark, and Asadi, Hamed
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MAGNETIC resonance imaging , *BRAIN research , *ARTIFICIAL intelligence , *SCANNING systems , *CLASSIFICATION - Abstract
Summary Radiological incidental findings (IFs) are previously undetected abnormalities which are unrelated to the original indication for imaging and are unexpectedly discovered. In brain magnetic resonance imaging (MRI), the prevalence of IFs is increasing. By reviewing the literature on IFs in brain MRI performed for research purposes and discussing ethical considerations of IFs, this paper provides an overview of brain IF research results and factors contributing to inconsistencies and considers how the consent process can be improved from an ethical perspective. We found that despite extensive literature regarding IFs in research MRI of the brain, there are major inconsistencies in the reported prevalence, ranging from 1.3% to 99%. Many factors appear to contribute to this broad range: lack of standardised definition, participant demographics variance, heterogenous MRI scanner strength and sequences, reporter variation and results classification. We also found significant discrepancies in the review, consent and clinical communication processes pertaining to the ethical nature of these studies. These findings have implications for future studies, particularly those involving artificial intelligence. Further research, particularly in relation to MRI brain IFs would be useful to explore the generalisability of study results. [ABSTRACT FROM AUTHOR]
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- 2024
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449. The effect of subjective understanding on patients' trust in AI pharmacy intravenous admixture services.
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Yongzhi Gong, Xiaofei Tang, and Haoyu Peng
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TRUST ,COGNITIVE psychology ,ARTIFICIAL intelligence ,AVERSION ,SUSPICION - Abstract
Introduction: Medical services are getting automated and intelligent. An emerging medical service is the AI pharmacy intravenous admixture service (PIVAS) that prepares infusions through robots. However, patients may distrust these robots. Therefore, this study aims to investigate the psychological mechanism of patients' trust in AI PIVAS. Methods: We conducted one field study and four experimental studies to test our hypotheses. Study 1 and 2 investigated patients' trust of AI PIVAS. Study 3 and 4 examined the effect of subjective understanding on trust in AI PIVAS. Study 5 examined the moderating effect of informed consent. Results: The results indicated that patients' reluctance to trust AI PIVAS (Studies 1-2) stems from their lack of subjective understanding (Study 3). Particularly, patients have an illusion of understanding humans and difficulty in understanding AI (Study 4). In addition, informed consent emerges as a moderating factor, which improves patients' subjective understanding of AI PIVAS, thereby increasing their trust (Study 5). Discussion: The study contributes to the literature on algorithm aversion and cognitive psychology by providing insights into the mechanisms and boundary conditions of trust in the context of AI PIVAS. Findings suggest that medical service providers should explain the criteria or process to improve patients' subjective understanding of medical AI, thus increasing the trust in algorithmbased services. [ABSTRACT FROM AUTHOR]
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- 2024
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450. Informed Consent in Clinical Training: Perspectives from Medical Students and Faculty in Portugal.
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Moreira, Carolina Frade, Costa-Santos, Cristina, Moreira, Bárbara Frade, Nunes, Rui, and Duarte, Ivone
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CROSS-sectional method ,MEDICAL education ,RESEARCH funding ,HEALTH occupations students ,SCIENTIFIC observation ,QUESTIONNAIRES ,UNIVERSITIES & colleges ,STATISTICAL sampling ,FISHER exact test ,COMPASSION ,COLLEGE teachers ,TEACHING methods ,DESCRIPTIVE statistics ,CHI-squared test ,PATIENT care ,MEDICAL students ,ETHICAL decision making ,INFORMED consent (Medical law) ,PATIENT-professional relations ,CLINICAL education ,DATA analysis software ,MEDICAL ethics - Abstract
The student–patient relationship represents the cornerstone of medical education, shaping future doctors' knowledge, skills and attitudes. While most patients allow student involvement in their care, some may express discomfort. Thus, obtaining explicit consent is essential to respect patients' right of autonomy. This study mainly aims to assess the practical application of informed consent by medical students and teachers regarding students' presence and participation in patients' care. An observational cross-sectional study was performed, and an online questionnaire was given to students and teachers at a single medical school, via institutional email. The study included 289 participants, namely 232 students and 57 teachers. While 81% of teachers reported always asking the patient's consent for students' presence, only 28% of students claimed this to be the case. Despite challenges like overcrowding and limited time, involving students in healthcare benefits both students and patients. Moreover, medical ethics education is crucial to foster compassionate care and promote ethical reasoning. The disparities found between teachers' practices and students' perspectives highlight the need to intervene and provide them with an adequate education on ethical values in clinical practice. Strategic interventions at institutional levels are required for a simultaneous high quality of patient care and clinical training. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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