Practicing care-full scholarship: Exploring the use of ‘visual informed consent’ in a study of motherhood, health and agroecology in Coventry, UK

Practicing care-full scholarship: Exploring the use of ‘visual informed consent’ in a study of motherhood, health and agroecology in Coventry, UK
Research Article
Mai Abbas, Alex Franklin, Stefanie Lemke, Chiara Tornaghi
Qualitative Research, 10 January 2024
Open Access
Abstract
The demand for alternative methods of providing informed consent is increasing, especially in research with marginalised (or illiterate) research participants. This article discusses the co-creation of a visual informed consent (VIC), in collaboration with an artist. The VIC was inspired by the experience of obtaining informed consent from a group of migrant women with limited English proficiency, in empirical research undertaken on agroecology and health in Coventry, UK. Reflecting further on its creation and wider utility, this article explores the inner values that might guide researchers and lead to the co-creation of care-full tools that meet the needs of research participants. Specifically, this includes, reflecting on the iterative process of developing a VIC and using an ethics of care as a primary conceptual framework. Findings reveal that participants’ understanding of ethical issues is facilitated using visual illustrations. It is argued that the creation of a VIC requires the researcher to be attentive to the embodied nature of research practice and guided by an ethics of care. A conceptual framework that integrates care and embodiment is presented, with the intention that it may further support the development of care-full research by others.

Ethical and legal challenges of medical AI on informed consent: China as an example

Ethical and legal challenges of medical AI on informed consent: China as an example
Wang Y, Ma Z
Developing World Bioethics, 19 January 2024
Abstract
The escalating integration of Artificial Intelligence (AI) in clinical settings carries profound implications for the doctrine of informed consent, presenting challenges that necessitate immediate attention. China, in its advancement in the deployment of medical AI, is proactively engaging in the formulation of legal and ethical regulations. This paper takes China as an example to undertake a theoretical examination rooted in the principles of medical ethics and legal norms, analyzing informed consent and medical AI through relevant literature data. The study reveals that medical AI poses fundamental challenges to the accuracy, adequacy, and objectivity of information disclosed by doctors, alongside impacting patient competency and willingness to give consent. To enhance adherence to informed consent rules in the context of medical AI, this paper advocates for a shift towards a patient-centric information disclosure standard, the restructuring of medical liability rules, the augmentation of professional training, and the advancement of public understanding through educational initiatives.

Using ChatGPT to Facilitate Truly Informed Medical Consent

Using ChatGPT to Facilitate Truly Informed Medical Consent
Fatima N. Mirza, Oliver Y. Tang, Ian D. Connolly, Hael A. Abdulrazeq, Rachel K. Lim, G. Dean Roye, Cedric Priebe, Cheryl Chandler, Tiffany J. Libby, Michael W. Groff, John H. Shin, Albert E. Telfeian, Curtis E. Doberstein, Wael F. Asaad, Ziya L. Gokaslan, James Zou, Rohaid Ali
New England Journal of Medicine AI, 10 January 2024
Abstract
Informed consent is integral to the practice of medicine. Most informed consent documents are written at a reading level that surpasses the reading comprehension level of the average American. Large language models, a type of artificial intelligence (AI) with the ability to summarize and revise content, present a novel opportunity to make the language used in consent forms more accessible to the average American and thus, improve the quality of informed consent. In this study, we present the experience of the largest health care system in the state of Rhode Island in implementing AI to improve the readability of informed consent documents, highlighting one tangible application for emerging AI in the clinical setting.

From Code to Care and Navigating Ethical Challenges in AI Healthcare

From Code to Care and Navigating Ethical Challenges in AI Healthcare
Book Chapter
Sourav Madhur Dey, Pushan Kumar Dutta
Human-Centered Approaches in Industry 5.0: Human-Machine Interaction, Virtual Reality Training, and Customer Sentiment Analysis, 2024 [IGI Global]
Abstract
Artificial intelligence (AI) has become a transformative force in the healthcare industry, offering unprecedented opportunities for improved diagnostics, patient treatment, and outcomes. However, its integration into healthcare systems has also brought to light a host of ethical concerns that require careful scrutiny. This chapter delves into the intricate nexus of ethics and AI in healthcare, shedding light on the multifaceted implications and challenges that arise. AI technologies such as machine learning (ML) and data analytics (DS) have immense potential to revolutionize healthcare. They can enhance diagnostic accuracy, enable the treatment of a larger number of patients, and improve patient outcomes. However, their implementation is not without ethical quandaries. These primarily revolve around data privacy, bias mitigation, transparency, responsibility, and patient independence. Transparency and interpretability are other essential aspects of the ethical discourse surrounding AI in healthcare.

Study on the Reasons of Discharge with the Personal Consent of Patients Admitted to the Emergency Ward of Kowsar Hospital of Semnan, Iran

Study on the Reasons of Discharge with the Personal Consent of Patients Admitted to the Emergency Ward of Kowsar Hospital of Semnan, Iran
Mehdi Yarahmadi, Mehri Ayati, Mohammad Taghi Ghorbanian
Journal of Guilan University of Medical Sciences, 20 January 2024
Abstract
Background
Discharge against Medical Advice (DAMA) indicates the dissatisfaction of patients with the care services of the health system. Additionally, it threatens the patient’s life and causes negative financial outcomes for hospitals.
Objective
This study aimed to identify the causes of self-discharge decisions in the emergency department at Kowsar Hospital, Semnan, Iran.
Methods
This was a descriptive-analytical study conducted between August 2021 to March 2022. The data were collected by a researcher-made questionnaire containing demographic characteristics and reasons for self-discharge, including three main concepts: personal, staff-related factors, and environmental factors with sub-concepts. Data were analyzed using SPSS.
Results
Of 140 patients with a mean age of 33.52 ± 16.17 years, 58.6% were men and 41.4% were women. Moreover, 63.6% of patients were married, 42.1% had a diploma education, and 11.4% had a history of taking neuropsychiatric drugs. Also, 42.9% of patients were covered by social security insurance. The highest rate of self-discharge was in the evening (42.1%) and night (37.9%) shifts. The most important reasons for self-discharge decision were problems related to insurance (30%), COVID-19 infection (26.4%), poor communication (17.1%), dissatisfaction with care (15.7 %), disrespectful behavior of staff (12.9%), and inappropriate emergency ward facilities (12.1%).
Conclusion
Make appropriate decisions to improve the quality of medical services and increase cooperation in health insurance, separating the departments of infectious diseases away from other departments, holding briefing sessions for physicians and medical staff, increasing awareness of patients about possible complications of self-discharge, and expanding the amenities of emergency ward can reduce the rate of self-discharge decision.

Editor’s note: The Guilan University of Medical Sciences is located in Rasht, Iran.

Compliance with research ethics in epidemiological studies targeted to conflict-affected areas in Western Ethiopia: validity of informed consent (VIC) by information comprehension and voluntariness (ICV)

Compliance with research ethics in epidemiological studies targeted to conflict-affected areas in Western Ethiopia: validity of informed consent (VIC) by information comprehension and voluntariness (ICV)
Research
Gemechu Tiruneh, Mekdes Yilma, Bizuneh Wakuma, Eba Abdisa, Lami Bayisa, Michelle Nichols, Anja Bedeker, Nicki Tiffin
BMC Medical Ethics, 18 January 2024
Open Access
Abstract
Background
The conduct of research is critical to advancing human health. However, there are issues of ethical concern specific to the design and conduct of research in conflict settings. Conflict-affected countries often lack strong platform to support technical guidance and monitoring of research ethics, which may lead to the use of divergent ethical standards some of which are poorly elaborated and loosely enforced. Despite the growing concern about ethical issues in research, there is a dearth of information about ethical compliance in conflict areas. Valid and ethically informed decision-making is a premier pact with research participants in settling possible ethical issues before commencing the research, which is ensured by gaining informed consent from prospective participants of the research.
Aims
This research aimed to explore compliance with research ethics and consent validity in community-based epidemiological research conducted previously.
Methods
Research participants were recruited in the western part of Ethiopia in three districts subjected to conflicts. A community-based cross-sectional study design was utilized, and 338 residents were enrolled as study participants. All participants had previously been enrolled as research participants in epidemiological studies. Data was collected using a questionnaire that was pilot-tested before the commencement of the main data collection. The questionnaire focused on participants’ experiences of the informed consent process followed when they were recruited for an epidemiological study and covered themes such as essential information provided, level of comprehension, and voluntarism of consent.
Results
Over half of the study participants, 176 (52%), were not provided with essential information before consenting. And 135 (40%) of them did not comprehend the information provided to them. One hundred and ninety (56%) participants freely and voluntarily agreed to partake in one of these epidemiological studies, with over a quarter (97; 28.7%) of them reporting they were subjected to undue influence. Written consent was obtained from only 32 (9.4%) of the participants.

The Role of Male Consent in Assisted Reproductive Technology Procedures: an Examination of Japanese Court Cases

The Role of Male Consent in Assisted Reproductive Technology Procedures: an Examination of Japanese Court Cases
Original Paper
Yuko Muraoka, Minori Kokado, Kazuto Kato
Asian Bioethics Review, 18 January 2024
Open Access
Abstract
With the development of assisted reproductive technologies, medical, ethical, legal, and social issues have arisen that did not exist when natural conception was the only means of childbirth. In Japan, men tend to believe that assisted reproductive technologies are not directly related to them, with the literature showing that men are often reluctant to be involved in fertility treatment processes. To better understand this situation, this study analyzes the role of male consent during assisted reproductive technology procedures in Japan. First, we examined Japanese court cases that dealt with issues related to male consent during assisted reproductive technology procedures and identified three situations in which problems related to male consent during such procedures may arise. Next, we analyzed the background of such issues and the implications of the lack of consent regarding men’s reproductive rights. Finally, we explored the need for legislation on assisted reproductive technologies. The study concludes that discussions on the scope of male partner rights in assisted reproductive technology procedures are key for minimizing unnecessary conflict between partners, thus ensuring both the rights of women who wish to have children and the welfare of their children.

Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review

Culturally appropriate consent processes for community-driven indigenous child health research: a scoping review
Research
Cindy Peltier, Sarah Dickson, Viviane Grandpierre, Irina Oltean, Lorrilee McGregor, Emilie Hageltorn, Nancy L. Young
BMC Medical Ethics, 3 January 2024; 25(3)
Open Access
Abstract
Background
Current requirements for ethical research in Canada, specifically the standard of active or signed parental consent, can leave Indigenous children and youth with inequitable access to research opportunities or health screening. Our objective was to examine the literature to identify culturally safe research consent processes that respect the rights of Indigenous children, the rights and responsibilities of parents or caregivers, and community protocols.
Methods
We followed PRISMA guidelines and Arksey and O’Malley’s approach for charting and synthesizing evidence. We searched MEDLINE, PsycINFO, ERIC, CINAHL, Google Scholar, Web of Science, Informit Indigenous Collection, Bibliography of Native North Americans, and Sociological Abstracts. We included peer-reviewed primary and theoretical research articles written in English from January 1, 2000, to March 31, 2022, examining Indigenous approaches for obtaining informed consent from parents, families, children, or youth. Eligible records were uploaded to Covidence for title and abstract screening. We appraised the findings using a Two-Eyed Seeing approach. These findings were inductively coded using NVivo 12 and analyzed thematically.
Results
We identified 2,984 records and 11 eligible studies were included after screening. Three key recommendations emerged: addressing tensions in the ethics of consent, embracing wise practices, and using relational approaches to consent. Tensions in consent concerned Research Ethics Board consent requirements that fall short of protecting Indigenous children and communities when culturally incongruent. Wise practices included allowing parents and children to consent together, land-based consenting, and involving communities in decision-making. Using relational approaches to consent embodied community engagement and relationship building while acknowledging consent for Indigenous children cannot be obtained in isolation from family and community.
Conclusions
Very few studies discussed obtaining child consent in Indigenous communities. While Indigenous communities are not a monolith, the literature identified a need for community-driven, decolonized consent processes prioritizing Indigenous values and protocols. Further research is needed to examine nuances of Indigenized consent processes and determine how to operationalize them, enabling culturally appropriate, equitable access to research and services for all Indigenous children.

Family roles in informed consent from the perspective of young Chinese doctors: a questionnaire study

Family roles in informed consent from the perspective of young Chinese doctors: a questionnaire study
Research
Hanhui Xu, Mengci Yuan
BMC Medical Ethics, 3 January 2024; 25(2)
Open Access
Abstract
Background
Based on the principle of informed consent, doctors are required to fully inform patients and respect their medical
decisions. In China, however, family members usually play a special role in the patient’s informed consent, which creates a unique “doctor-family-patient” model of the physician-patient relationship. Our study targets young doctors to investigate the ethical dilemmas they may encounter in such a model, as well as their attitudes to the family roles in informed consent.
Methods
A questionnaire was developed including general demographic characteristics, the fulfillment of the obligation to fully inform, who will be informed, and the ethical dilemmas in decision-making. We recruited a total of 421 doctors to complete this questionnaire, of which 368 met the age requirements for this study. Cross tabulation and Pearson’s chi-squared test were used to analyze the differences between types of patients for categorical variables, and a p-value < 0.05 was considered statistically significant.
Results
Our data shows that only 20 doctors (5.40%) stated “informing the patient alone is sufficient” when it comes to informing patients of their serious conditions. The rest of the participants would ensure that the family was informed. When facing elderly patients with decision-making capacity, the data was statistically different (3.8%; P < 0.001) The primary reason for ensuring that family members be informed differs among the participants. In addition, when family members asked doctors to conceal the patient’s medical condition for the best interests of patients, 270 doctors (73.4%) would agree and cooperate with the family. A similar proportion (79.6%) would do so when it comes to elderly patients.
Conclusions
(1) Chinese doctors pay extra attention to informing the patient’s family, which may not be in the patient’s best interests. (2) Chinese doctors treat adult (but not elderly) patients and elderly patients differently when it comes to informing family members. (3) When family members request that doctors withhold information from patients “in the best interest of the patient,” the majority choose to comply with the request, although this may cause them distress.

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

Surgical informed consent practices and influencing factors in sub-Saharan Africa: a scoping review of the literature
Systematic Review
Chiara Pittalis, Cherie Sackey, Paul Okeny, Bip Nandi, Jakub Gajewski
BMJ Quality & Safety, 30 December 2023
Open Access
Abstract
Introduction
Current 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 (SSA), despite this region facing the highest burdens of disease amenable to surgery globally. The aim of this study was to examine how the concept of informed consent for surgery is interpreted and applied in the context of SSA, and factors affecting current practices.
Methods
A systematic search of Medline, Embase and African Journal OnLine databases as well as grey sources was executed in May 2023 to retrieve relevant literature published since 2010 in English language against a set of given criteria. The socioecological framework for health was used for organising and summarising the identified evidence.
Results
A total of 27 papers were included in the review. Findings revealed that consent to surgery practices is generally substandard across SSA and the process is not adequate. Patients’ understanding of informed consent is limited, likewise awareness of their rights to decision-making. A range of factors at the individual, interpersonal, institutional and system/societal levels affect the informed consent process.
Conclusion
There is a need to find more culturally acceptable and ethical ways to include the participation of patients in the decision-making process for surgical treatment in the SSA and define standards more closely aligned with the local context.