Consent Practices Research Articles

Dentists' perspectives, practices, and factors associated with informed consent process for fixed prosthodontic treatment: a cross-sectional study of kampala metropolitan area, Uganda.

Dentists have a legal and ethical obligation to obtain informed consent from patients before carrying out treatment. In Uganda, the process of obtaining informed consent in dentistry is not well documented. The aim of the present study was to determine dentists' perspectives and practices regarding informed consent to fixed prosthodontic treatment (FPT) in Kampala Metropolitan, Uganda. A quantitative cross-sectional study was conducted among 153 dentists from July to September 2023. Data were collected using a semi-structured self-administered questionnaire that included both closed- and open-ended questions. The questionnaire included items on participants' sociodemographic information, perspectives, and practices about informed consent for FPT. Perspectives were rated using ten items on a five-point Likert scale. The minimum possible total score was 10, and the maximum possible score was 50. Descriptive statistics and Poisson regression were used to summarize and analyze the quantitative data, and the significance level was set at p < 0.05. Open-ended items were analyzed using content analysis. The majority (83.9%) of the participants were general dentists with working experience ranging from 1 to 38 years and a median of 8 years. The majority were familiar with the concept of informed consent and had positive perspectives regarding its use for FPT. The mean score for perspectives was 39.27 (SD, 5.42). However, there were variations in the practices of the dentists. More than three-quarters (87.6%) reported that they always obtained the patient's informed consent before FPT. Less than a third (29.4%) obtained written consent for FPT. About half of the dentists provided information regarding the procedure, benefits, and risks of treatment during the consent process. Bivariate analysis showed that the use of written consent for FPT was significantly (p < 0.05) associated with having a work experience of more than 10 years and having had training involving informed consent after undergraduate studies. The present study provides baseline data regarding perspectives and practices regarding informed consent for FPT among dentists in Uganda. It is recommended that regular training courses be developed to highlight the importance of improved informed consent practices for patient protection and to instruct dentists about obtaining valid informed consent. There is a need for future research to streamline guidelines for the informed consent process in dental care in Uganda.

Obtaining Consent for Research on Risky Behaviours Among Adolescents in Canada: A Scoping Review.

This scoping review explores current practices for obtaining consent in research on risky behaviours among adolescents in Canada. The JBI methodology for scoping reviews was used. The database search was conducted in August 2021 and updated in November 2022. Papers published in 2010 or later were included. Extracted data included study characteristics, sample characteristics, and consent procedures. The review included 83 reports covering 57 studies. Nearly 60% of studies relied on adolescent self-consent for participation. Adolescent self-consent was more common than parental/guardian consent for studies using in-person research methods, older adolescent groups, and particularly vulnerable populations. Parental/guardian consent was more common for studies using younger age groups and general population samples. Adolescent self-consent was more common than parental/guardian consent for most risky behaviours covered by this review. These results provide insight into current consent practices in this area and offer guidance to researchers and institutional review boards in Canada.

Integrating Consent Practices in Dance Education

ABSTRACT Utilizing consent practices in dance classrooms offers students greater control over their own bodies and increases accessibility, especially for those affected by sexual violence, racial injustice, and other forms of trauma and oppression. Increasingly consent practices are becoming critical tools for dance education. This article surveys literature on consent in dance and education and draws on the author’s experience incorporating consent practices in post secondary dance classrooms to offer a how-to guide. Explicit, consistent, multi-faceted, and power-sensitive approaches are needed to effectively create a culture of consent in dance classrooms. The principles and practices presented here address touch, as well as other acts of risk and vulnerability, making them applicable to technique classes and rehearsals, and other types of dance classes such as choreography, improvisation, anatomy, or dance history. Through effective use of consent practices, students can access the autonomy they need to care for themselves, be brave, and take risks.

Valid consent in the acute hospital setting: perspectives of patients and members of the public

BackgroundPeople who interact with healthcare services have an ethical and legal right to control their own lives, to make informed decisions, and to consent to what happens to them. For consent to be considered ethically and legally valid, three key criteria must be met: consent must be given voluntarily; people must be sufficiently informed of all options; and people should have capacity to make the decision to give or withhold their consent.AimThis study set out to explore, through the use of surveys, the perspectives of patients and public in relation to consent.MethodSurveys were developed for patients and the public and administered paper based (patients) and through social media (public).ResultsOne hundred and forty surveys were posted to patients, with a 38% response rate; 104 responses were received from the public. Ninety-six percent of patients were satisfied that the decision they made was informed; 100% felt they had made a voluntary decision; 98% felt the clinician seemed knowledgeable about the procedure. What matters most to the public were being informed about the risks associated with the proposed procedure and being assured that whatever choice they make they will receive the best care possible.ConclusionsThe results highlight interesting similarities and differences in relation to consent between members of the public thinking about a possible treatment, surgery, or procedure and those patients who have actually been through the process in the past 12 months. Recommendations have been developed on the basis of these findings to co-design improvements in consent practices.

Informed consent in cancer clinical care: Perspectives of healthcare professionals on information disclosure at a tertiary institution in Uganda.

While there have been several studies examining the understanding and quality of informed consent in clinical trials of cancer therapies, there is limited empirical research on health practitioners' experiences on the informed consent process in cancer care, especially from low resource settings. This study explored health professionals' perspectives on information disclosure during the consenting process in cancer care. A qualitative descriptive approach was used to collect data. Face to face interviews were conducted with 10 purposively selected healthcare professionals who were actively involved in soliciting informed consent at a cancer treatment centre in Uganda. A thematic approach was used to interpret the results. There were five key themes, and these included information disclosure to patients; assessment of patients' cancer awareness, treatment preferences and expectations; informed consent practices; barriers to optimal informed consent and information disclosure; and recommendations for improving the consenting process. All respondents appreciated the value of disclosing accurate information to patients to facilitate informed decision making. However, the informed consent process was deemed sub-optimal. Respondents asserted that patients should be the psychological wellbeing of patients should be protected by mentally preparing them before disclosing potentially distressing information. All healthcare professionals were appreciative of the central role the family plays in the consenting process. Overall, informed consent practices were not ideal because of the several challenges. Inadequate time is devoted to information disclosure and patient education; there is lack of privacy; and informed consent documentation is poor. There is a need for significant improvement in informed consent practices and healthcare professional-patient communication.

Ethics and Best Practices of Studying Contemporary Human Populations

At the 2021 meeting of the American Association of Biological Anthropologists, the “Ethics and Best Practices of Studying Contemporary Human Populations” symposium brought together a diverse panel of scientists to address the growing concerns related to consent, communication, and ethical practices in biological anthropology research. Drawing from historical parallels and current practices, the panel underscored the responsibilities of researchers to engage transparently and respectfully with the subjects of their studies. This article summarizes some of the topics raised and debated at that meeting, including the specific challenges posed by the COVID-19 pandemic and the resulting surge in studies utilizing biological data from diverse populations, and the meaning of informed consent, genetic privacy, and data justice. The authors emphasize the importance of diversity and inclusion within research teams and leadership roles, and the role this can play in reshaping research approaches and fostering innovation in our field. They challenge the traditional notions of informed consent and encourage a more nuanced understanding that acknowledges the historical context and respects refusals as a form of knowledge production. The diverse perspectives shared at the symposium offer a glimpse into the ongoing efforts of biological anthropologists to navigate ethical challenges in contemporary human population studies. The collective aim is to spark sustained conversations and collaborative endeavors within biological anthropology and to promote continuous improvement in ethical standards and best practices.

Contextual and Structural Factors, Project Modelling and Sustainability of Entrepreneurial Development Projects: A Conceptual Framework

Projects emanate from ideas to solve an underlying need. Ideally, a project aims to solve a problem among beneficiaries. Notwithstanding the imperative role of entrepreneurship in socioeconomic prosperity, sustainability of development projects focusing on the empowerment of entrepreneurs is gaining attention on the wheels of research. Of interest are entrepreneurial development projects that fail to attain the desired impacts despite huge capital investments. Ineffective decision-making associated with unrealistic expectations often implicates sustainable delivery of outcomes. Hoverers, foundations for sustainable delivery of entrepreneurship development projects are elusively theorized. Lack of theoretical consent and standardized practice of modelling project intervention relative to attaining sustainable deliverables deprives us of essential knowledge for decision-making. Failure to align project implementation models to the prevailing reality of entrepreneurship is believed to contribute to this dismal. Against the background, this paper presents a theoretical and conceptual framework for the interaction between contextual and structural factors, project modelling and sustainability of entrepreneurial development project interventions. 21 peer-reviewed articles were selected through screening. Meta-analysis was used to review the converging and diverging issues while identifying and synthesizing research gaps that connect with the research problem identified. While project modelling was found to be critical in achieving sustainable impacts, the findings were based on linear perspectives and ignored the prevailing structural and contextual dynamics. Hence, the proposition that structural and contextual factors mediate and moderate the sustainability of entrepreneurial development projects, respectively.

Forensic DNA Profiling: Legal and Ethical Considerations

Forensic DNA analysis is vital in criminal investigations, posing intricate legal and ethical dilemmas. This emphasises the need to balance DNA technology benefits with individual rights, prioritizing privacy, consent, and ethical practices. Stringent regulation of DNA data management is essential to prevent misuse and ensure privacy protection. Advances like probabilistic genotyping software improve interpretation accuracy, addressing complexities in mixture analysis. Responsible DNA use also requires navigating emerging technologies like next-generation sequencing while upholding ethical standards. Establishing transparency, accuracy, and ethical conduct throughout the analysis process is crucial for building public trust. Regulatory oversight and accountability mechanisms are necessary to address errors and maintain fairness in DNA data management. Through continuous dialogue and adherence to ethical standards, the forensic community can uphold scientific integrity and preserve public confidence in DNA analysis.

Evaluating the Association between the Implementation of the PoET (Prevention of Error-Based Transfers) Southwest Spread Project and Palliative Care Provision: A Quasi-Experimental Matched Cohort Study Using Population-Level Health Administrative Data

ObjectivesThe PoET (Prevention of Error-based Transfers) project seeks to align long-term care (LTC) home informed consent practices to existing legislation, thereby reducing consent-related error-based transfers to acute care. We sought to measure changes in resident-level palliative care provision after participating in the PoET Southwest Spread Project (PSSP), and to identify patient and LTC home characteristics associated with palliative care provision. DesignQuasi-experimental matched (1:1 ratio) cohort study design using linked population-based health administrative data. SettingSixty LTC homes (PSSP = 30; Control = 30) in Ontario, Canada, from November 2019 to December 2021. MethodsWe matched 30 PSSP to 30 control homes and described incidence rates for resident-level palliative care provision (ie, physician palliative care encounters and palliative medication prescriptions) during the 7-month postimplementation period. We used generalized linear mixed models to evaluate the association between PSSP implementation and palliative care provision during the postimplementation period. We adjusted for resident-level characteristics (ie, age, sex, comorbidity status) and home-level characteristics (ie, rurality status, profit model, COVID-19 impact). We identified a decedent subcohort to measure palliative care provision patterns during the last 2 months of life. ResultsWe captured a matched cohort of 8894 residents (PSSP = 4103; Control = 4791). Incidence rates of palliative care encounters increased during the postimplementation period for PSSP (82.6 to 85.4 per 100 person-months) but not for control residents (68.8 to 65.3 per 100 person-months). After adjusting for key covariates, PSSP exposure was associated increased palliative care provision (incidence rate ratio 2.47, 95% CI 2.31-2.64) and palliative care medication prescription (1.16, 95% CI 1.12-1.20). Larger home size, certain health regions, and higher number of comorbidities were associated with increased physician palliative care encounters. Conclusions and ImplicationsBy promoting correct informed consent practices in LTC, PSSP participation increased palliative care provision for PSSP LTC residents across all settings.

Trust-building: Why Virtual Formats Threaten the Moral Ends of Surgical Informed Consent.

The coronavirus disease 2019 pandemic forced a wide range of medical practices to virtual formats, including the preoperative informed consent practice. However, virtual informed consent persists despite the pandemic being largely considered resolved. The continued use of virtual formats relies on a problematic "information transfer" model of informed consent. We suggest a "trust-building" model of consent as a better conceptualization of what is occurring during the consent process. Highlighting how virtual formats might fail to fulfill this fuller understanding of consent on both interpersonal and systemic levels, we offer an ethical structure for physicians to navigate this novel virtual space.

Assessment of the current status of real-world pharmacogenomic testing: informed consent, patient education, and related practices.

Introduction: The practice of informed consent (IC) for pharmacogenomic testing in clinical settings varies, and there is currently no consensus on which elements of IC to provide to patients. This study aims to assess current IC practices for pharmacogenomic testing. Methods: An online survey was developed and sent to health providers at institutions that offer clinical germline pharmacogenomic testing to assess current IC practices. Results: Forty-six completed surveys representing 43 clinical institutions offering pharmacogenomic testing were received. Thirty-two (74%) respondents obtain IC from patients with variability in elements incorporated. Results revealed that twenty-nine (67%) institutions discuss the benefits, description, and purpose of pharmacogenomic testing with patients. Less commonly discussed elements included methodology and accuracy of testing, and laboratory storage of samples. Discussion: IC practices varied widely among survey respondents. Most respondents desire the establishment of consensus IC recommendations from a trusted pharmacogenomics organization to help address these disparities.

Unlocking the potential of big data and AI in medicine: insights from biobanking.

Big data and artificial intelligence are key elements in the medical field as they are expected to improve accuracy and efficiency in diagnosis and treatment, particularly in identifying biomedically relevant patterns, facilitating progress towards individually tailored preventative and therapeutic interventions. These applications belong to current research practice that is data-intensive. While the combination of imaging, pathological, genomic, and clinical data is needed to train algorithms to realize the full potential of these technologies, biobanks often serve as crucial infrastructures for data-sharing and data flows. In this paper, we argue that the 'data turn' in the life sciences has increasingly re-structured major infrastructures, which often were created for biological samples and associated data, as predominantly data infrastructures. These have evolved and diversified over time in terms of tackling relevant issues such as harmonization and standardization, but also consent practices and risk assessment. In line with the datafication, an increased use of AI-based technologies marks the current developments at the forefront of the big data research in life science and medicine that engender new issues and concerns along with opportunities. At a time when secure health data environments, such as European Health Data Space, are in the making, we argue that such meta-infrastructures can benefit both from the experience and evolution of biobanking, but also the current state of affairs in AI in medicine, regarding good governance, the social aspects and practices, as well as critical thinking about data practices, which can contribute to trustworthiness of such meta-infrastructures.

INTERNATIONAL POLICE COOPERATION: REDUCING GLOBAL CRIME AND HARM

On November 14, 2023, Assistant Commissioner Bruce O’Brien, New Zealand Police, presented International Police Cooperation: Reducing Global Crime and Harm for this year’s West Coast Security Conference. The key points discussed were the advantages and challenges of collaborative international policing, upcoming challenges due to technological advancements, and the significance of advancing through consent, legitimacy, and evidence-based global policing practices.&#x0D; &#x0D; Received: 12-19-2023&#x0D; Revised: 01-26-2024

Informed consent practice and associated factors among healthcare professionals in public hospitals of Southern Ethiopia, 2023: a mixed-method study

BackgroundPatients may sign a consent form before the specific treatment is offered for a variety of reasons, including during an outpatient appointment. Healthcare professionals must obtain consent from patients or other legal persons before providing any treatment or performing any procedures. But, little attention has been given to the informed consent process in Ethiopia.ObjectiveTo assess informed consent practice and associated factors among healthcare professionals in Wolaita Zone, Southern Ethiopia public hospitals from January, 2023.MethodsAn institutional-based cross-sectional mixed-method study was conducted among 399 healthcare professionals. Simple random sampling and purposive sampling techniques were used to select healthcare professionals for quantitative and qualitative studies respectively. Data for both studies were collected using self-administered questionnaire and key informant interview respectively. EpiDataV4.6 and the Statistical Package for the Social Science was used for entry and analysis of quantitative data. OpenCode software was used for thematic analysis for qualitative data.Results339 respondents were included in the study, with a response rate of 94.3%. The good practice of informed consent among the healthcare professionals is 53.1%. There was a significant association between the good practice of informed consent and being male [AOR: 0.003 (95% CI: 0.000–0.017)], working in a comprehensive specialized hospital [AOR: 4.775 (95% CI: 1.45–15.74)] and in-service training [AOR: 0.038 (95% CI: 0.013–0.114)].Conclusion and recommendationsMore than half of healthcare professionals had good practices for informed consent. However, it is critical to plan and intervene various strategies with the goal of improving knowledge and attitude toward informed consent.

Open Data governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum.

Scientific research communities pursue dual imperatives in implementing strategies to share their data. These communities attempt to maximize the accessibility of biomedical data for downstream research use, in furtherance of open science objectives. Simultaneously, such communities safeguard the interests of research participants through data stewardship measures and the integration of suitable risk disclosures to the informed consent process. The Canadian Open Neuroscience Platform (CONP) convened an Ethics and Governance Committee composed of experts in bioethics, neuroethics, and law to develop holistic policy tools, organizational approaches, and technological supports to align the open governance of data with ethical and legal norms. The CONP has adopted novel platform governance methods that favor full data openness, legitimated through the use of robust deidentification processes and informed consent practices. The experience of the CONP is articulated as a potential template for other open science efforts to further build upon. This experience highlights informed consent guidance, deidentification practices, ethicolegal metadata, platform-level norms, and commercialization and publication policies as the principal pillars of a practicable approach to the governance of open data. The governance approach adopted by the CONP stands as a viable model for the broader neuroscience and open science communities to adopt for sharing data in full open access.

Data professionals' attitudes on data privacy, sharing, and consent in healthcare and research.

Individuals who work on health data systems and services are uniquely positioned to understand the risks of health data collection and use. We designed and conducted a survey assessing the perceptions of those who work with health data around health data consent, sharing, and privacy practices in healthcare and clinical research. A 43-item online survey was distributed via a market research firm to individuals (18+) who work with health data in the United States from March to April 2023. Descriptive statistics were calculated for all variables. Associations with demographic variables were assessed using Pearson's X 2 tests and ordinal logistic regression. Most of our respondents (61.7%) reported that they would trust people to use their health data across various sectors, but more respondents trusted those working in academic medical research (86.5%) and healthcare offices (89.9%) compared to those working in industry (68.2%). Despite this reported trust, a strong majority believed that individuals should have complete control over their health data (97.3%), specific consent should be obtained for each use of their health data (92.0%), and that there should be higher standards of consent and privacy for health records data than other types of data (93.7%). Based on our findings, we might infer that people who work with health data generally trust institutions across sectors to protect their health data. However, many would prefer to have complete control over who has access to their health data and how it is used. These insights should be explored further through qualitative studies.

Ethical frameworks of informed consent in the age of pediatric precision medicine.

Precision medicine is an emergent medical paradigm that uses information technology to inform the use of targeted therapies and treatments. One of the first steps of precision medicine involves acquiring the patient's informed consent to protect their rights to autonomous medical decision-making. In pediatrics, there exists mixed recommendations and guidelines of consent-related practices designed to safeguard pediatric patient interests while protecting their autonomy. Here, we provide a high-level, clinical primer of (1) ethical informed consent frameworks widely used in clinical practice and (2) promising modern adaptations to improve informed consent practices in pediatric precision medicine. Given the rapid scientific advances and adoption of precision medicine, we highlight the dual need to both consider the clinical implementation of consent in pediatric precision medicine workflows as well as build rapport with pediatric patients and their substitute decision-makers working alongside interdisciplinary health teams.

Surgical informed consent practices and influencing factors in sub-Saharan Africa: a scoping review of the literature

IntroductionCurrent international standards in consent to surgery practices are usually derived from health systems in Western countries, while little attention has been given to other contexts such as sub-Saharan Africa...

From informed to empowered consent.

Informed consent is ethically incomplete and should be redefined as empowered consent. This essay challenges theoretical assumptions of the value of informed consent in light of substantial evidence of its failure in clinical practice and questions the continued emphasis on autonomy as the primary ethical justification for the practice of consent in health care. Human dignity-rather than autonomy-is advanced from a nursing ethics perspective as a preferred justification for consent practices in health care. The adequacy of an ethic of obligation (namely, principlism) as the dominant theoretical lens for recognising and responding to persistent problems in consent practices is also reconsidered. A feminist empowerment framework is adopted as an alternative ethical theory to principlism and is advanced as a more practical and complete lens for examining the concept and context of consent in health care. To accomplish this, the three leading conceptions of informed consent are overviewed, followed by a feminist critique to reveal practical problems with each of them. The need for a language change from informed to empowered consent is strongly considered. Implications for consent activities in clinical practice are reviewed with focused discussion on the need for greater role clarity for all involved in consent-beyond and inclusive of the patient-physician dyad, as the practice and improvement of consent is necessarily a transdisciplinary endeavour. Specific concrete and practical recommendations for leveraging nursing expertise in this space are presented. Perhaps what is most needed in the discourse and practice of consent in health care is nursing.

Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review

ObjectiveTo identify factors acting as barriers or enablers to the process of healthcare consent for people with intellectual disability and to understand how to make this process equitable and accessible.Data...