Search results for: consent
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 407

Search results for: consent

407 Open Consent And Artificial Intelligence For Health Research in South Africa

Authors: Amy Gooden

Abstract:

Various modes of consent have been utilized in health research, but open consent has not been explored in South Africa’s AI research context. Open consent entails the sharing of data without assurances of privacy and may be seen as an attempt to marry open science with informed consent. Because all potential uses of data are unknown, it has been questioned whether consent can be informed. Instead of trying to adapt existing modes of consent, why not adopt a new perspective? This is what open consent proposes and what this research will explore in AI health research in South Africa.

Keywords: artificial intelligence, consent, health, law, research, South Africa

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406 “Ethical Porn” and the Right to Withdraw Consent

Authors: Nathan Elvidge

Abstract:

This paper offers a philosophical argument against the possibility of so-called “ethical porn,” that is, pornographic material produced in a way attempting to remain consistent with feminist principles and female empowerment. One key feature of such material is the requirement for the material to be consensual on the part of the actors or those involved in the material. However, in the contemporary pornography industry, this typically amounts to a single historic act of consent given in exchange for a lump-sum payment which grants the producer lifetime property rights over the explicit material. This paper argues that, by the lights of feminist principles, this situation is inherently unjust and that, as a consequence, the pornography industry requires a radical systematic upheaval before any material produced within it can be considered genuinely ethical. These feminist principles require that for the consumption of pornography to be genuinely ethical, the actors must consent not only to the acts recorded in the material but also to the consumption of that material. This paper argues that this consent to consumption should be treated as on par with other matters of sexual consent and, therefore, that actors should have the right to withdraw consent to the consumption of their material. From this, it is argued to follow that the system of third-party ownership of property rights over someone else’s sexually explicit material legally nullifies this right and therefore is inherently unjust.

Keywords: consent, feminism, pornography, sex work

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405 Service Evaluation of Consent for Hand and Wrist Surgery and Formulation of Evidence-Based Guidelines

Authors: Parsa Keyvani, Alistair Phillips, David Warwick

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Background: The current process for gaining patient consent for hand and wrist surgery at University Hospital Southampton (UHS) is paper-based and makes use of generic forms provided by the NHS and no patient information leaflet is available relating to hand and wrist surgery. Aims: To evaluate the process of obtaining clinical consent and suggest ways in which the service can be improved. Methods: A log-book review of four orthopaedic surgeons at UHS was carried out over a three-month period in order to identify the 10 most common types of elective hand and wrist surgeries performed. A literature review was carried out to identify the complications of these surgeries. The surgeries were then divided into 6 types: nerve, bone, ligament, joint, tendon and dupuytren’s surgery. A digitised consent form was created covering the complications of all 6 surgery types. Finally, the surgeons at the orthopaedic department of UHS were asked whether they prefer the old paper-based or the digitised consent form. Results: All of the surgeons felt that the procedure type-based form was easier to read, use and understand. Conclusion: This research highlights a number of problems related to the use of current NHS consent forms. The proposed solution is to use a set of digitised, procedure type-based consent forms. Digital consent forms can be filled in in advance and sent to the patient electronically along with any relevant information leaflets, thus giving them time to absorb the information and come up with any questions before they have their pre-procedure discussion with their doctor. This would allow the doctor to focus the consultation on the patient rather than writing out the consent form and would ultimately be a step forward in making the NHS a global digital leader and fully embrace the opportunity offered by technology.

Keywords: digitised consent form, elective surgery, hand surgery complications, informed consent, procedure type-based consent form

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404 Abstract- Mandible Fractures- A Simple Adjunct to Inform Consent

Authors: Emma Carr, Bilal Aslam-Pervez, David Laraway

Abstract:

Litigation against surgeons and hospitals continues to increase in Western countries. While verbal consent is all that is required legally, it has for a long time been considered that written consent offers proof of discussion and interaction between the surgeon and the patient. Inadequate consenting of patients continues in the United Kingdom leaving surgeons and Health Trusts open to litigation. We present a standardised consent form which improves patient autonomy and engagement. The General Medical Council recommends that all material risks relevant to the patient are discussed and recorded prior to undergoing surgery, regardless of how likely they are to occur. Current literature was reviewed to evaluate complications associated with surgical management of mandible fractures. Analysis of risks on 52 consent forms were analysed within the Glasgow OMFS department, leading to a procedure-specific form being designed and implemented. This audit showed that the documentation of risks on consent forms was extremely variable- with uncommon risks not being recorded. Interestingly, not a single consent form was found which highlighted all the risks associated with mandible fractures. Our re-audit data confirms 100% of risks being discussed when a procedure specific form is utilised. Our hope, is to introduce further forms for inclusion on the BAOMS website and peripheral distribution. The forms are quick and easy to print and leave more time for consultation with the patient. Whilst we are under no illusion that the forms may not decrease the incidence of intended litigation, we feel confident that they will decrease the chances of it being successful.

Keywords: consent, litigation, mandible fracture, surgery

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403 Impacts of Artificial Intelligence on the Doctor-Patient Relationship: Ethical Principles, Informed Consent and Medical Obligation

Authors: Rafaella Nogaroli

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It is presented hypothetical cases in the context of AI algorithms to support clinical decisions, in order to discuss the importance of doctors to respect AI ethical principles. Regarding the principle of transparency and explanation, there is an impact on the new model of patient consent and on the understanding of qualified information. Besides, the human control of technology (AI as a tool) should guide the physician's activity; otherwise, he breaks the patient's legitimate expectation in a specific result, with the consequent transformation of the medical obligation nature.

Keywords: medical law, artificial intelligence, ethical principles, patient´s informed consent, medical obligations

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402 Smart Signature - Medical Communication without Barrier

Authors: Chia-Ying Lin

Abstract:

This paper explains how to enhance doctor-patient communication and nurse-patient communication through multiple intelligence signing methods and user-centered. It is hoped that through the implementation of the "electronic consent", the problems faced by the paper consent can be solved: storage methods, resource utilization, convenience, correctness of information, integrated management, statistical analysis and other related issues. Make better use and allocation of resources to provide better medical quality. First, invite the medical records department to assist in the inventory of paper consent in the hospital: organising, classifying, merging, coding, and setting. Second, plan the electronic consent configuration file: set the form number, consent form group, fields and templates, and the corresponding doctor's order code. Next, Summarize four types of rapid methods of electronic consent: according to the doctor's order, according to the medical behavior, according to the schedule, and manually generate the consent form. Finally, system promotion and adjustment: form an "electronic consent promotion team" to improve, follow five major processes: planning, development, testing, release, and feedback, and invite clinical units to raise the difficulties faced in the promotion, and make improvements to the problems. The electronic signature rate of the whole hospital will increase from 4% in January 2022 to 79% in November 2022. Use the saved resources more effectively, including: reduce paper usage (reduce carbon footprint), reduce the cost of ink cartridges, re-plan and use the space for paper medical records, and save human resources to provide better services. Through the introduction of information technology and technology, the main spirit of "lean management" is implemented. Transforming and reengineering the process to eliminate unnecessary waste is also the highest purpose of this project.

Keywords: smart signature, electronic consent, electronic medical records, user-centered, doctor-patient communication, nurse-patient communication

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401 Sexual Consent: Exploring the Perceptions of Heterosexual, Gay, and Bisexual Men

Authors: Shulamit Sternin, Raymond M. McKie, Carter Winberg, Robb N. Travers, Terry P. Humphreys, Elke D. Reissing

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Issues surrounding sexual consent negotiation have become a major topic of societal concern. The majority of current research focuses on the complexities of sexual consent negotiations and the multitude of nuanced issues that surround the consent obtainment of heterosexual adults in post-secondary educational institutions. To date, the only study that has addressed sexual consent negotiation behaviour in same-sex relationships focused on the extent to which individuals used a variety of different verbal and nonverbal sexual consent behaviours to initiate or respond to sexual activity. The results were consistent with trends found within heterosexual individuals; thus, suggesting that the current understanding of sexual consent negotiation, which is grounded in heterosexual research, can serve as a strong foundation for further exploration of sexual consent negotiation within same-sex relationships populations. The current study quantitatively investigated the differences between heterosexual men and gay and bisexual men (GBM) in their understanding of sexual consent negotiation. Exploring how the perceptions of GBM differ from heterosexual males provides insight into some of the unique challenges faced by GBM. Data were collected from a sample of 252 heterosexual men and 314 GBM from Canada, the United States, and Western Europe. Participants responded to the question, 'do you think sexual consent and sex negotiation is different for heterosexual men compared to gay men? If so, how?' by completed an online survey. Responses were analysed following Braun & Clarke’s (2006) six phase thematic analysis guidelines. Inter-rater coding was validated using Cohen’s Kappa value and was calculated at (ϰ = 0.84), indicating a very strong level of agreement between raters. The final thematic structure yielded four major themes: understanding of sexual interaction, unique challenges, scripted role, and universal consent. Respondents spoke to their understanding of sexual interaction, believing GBM sexual consent negotiation to be faster and more immediate. This was linked to perceptions of emotional attachment and the idea that sexual interaction and emotional involvement were distinct and separate processes in GBM sexual consent negotiation, not believed to be the case in heterosexual interactions. Unique challenges such as different protection concerns, role declaration, and sexualization of spaces were understood to hold differing levels of consideration for heterosexual men and GBM. The perception of a clearly defined sexual script for GBM was suggested as a factor that may create ambiguity surrounding sexual consent negotiation, which in turn holds significant implications on unwanted sexual experiences for GBM. Broadening the scope of the current understanding of sexual consent negotiation by focusing on heterosexual and GBM population, the current study has revealed variations in perception of sexual consent negotiation between these two populations. These differences may be understood within the context of sexual scripting theory and masculinity gender role theory. We suggest that sexual consent negotiation is a health risk factor for GBM that has not yet been adequately understood and addressed. Awareness of the perceptions that surround the sexual consent negotiation of both GBM and heterosexual men holds implications on public knowledge, which in turn can better inform policy making, education, future research, and clinical treatment.

Keywords: sexual consent, negotiation, heterosexual men, GBM, sexual script

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400 The Marriage of a Sui Juris Girl: Permission of Wali (Guardian) or Consent of Ward in the Context of Personal Law in Pakistan

Authors: Muhammad Farooq

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The present article explores the woman's consent as a paramount element in contracting a Muslim marriage. Also, whether permission of the wali (guardian) is a condition per se for a valid nikah (marriage deed) in the eye of law and Sharia. The researcher attempts to treat it through the related issues, inter alia; the marriage guardian, the women's legal capacity to give consent whether she is a virgin or nonvirgin and how that consent is to be given or may be understood. Does her laugh, tears or salience needs a legal interpretation as well as other female manifestations of emotion explained by the Muslim jurists? The silence of Muslim Family Law Ordinance 1961 (hereafter; MFLO 1961) in this regard and the likely reasons behind such silence is also inquired in brief. Germane to the theme, the various cases in which the true notion of woman's consent is interpreted by courts in Pakistan are also examined. In order to address the issue in hand, it is proposed to provide a brief overview of a few contemporary writers' opinions in which the real place of woman's consent in Muslim marriage is highlighted. Key to the idea of young Muslim woman's marriage, the doctrine of kafa'a (equality or suitability) between the man and woman is argued here to be grounded in the patriarchal and social norms. It is, therefore, concluded that such concept was the result of analogical reasoning and has less importance in the present time. As such it is not a valid factor in current scenarios to validate or invalidate marital bonds. A standard qualitative convention is used for this research. Among primary and secondary sources; for examples, Qur'an, Sunnah, Books, Scholarly articles, texts of law and case law is used to point out the researcher's view. In summation, the article is concluded with a bold statement that a young woman being a party to the contract, is absolutely entitled to 'full and free' consent for the Muslim marriage contract. It is the woman, an indispensable partaker and her consent (not the guardian' permission) that does validate or invalidate the said agreement in the eye of contemporary personal law and in Sharia.

Keywords: consent of woman, ejab (declaration), Nikah (marriage agreement), qabol (acceptance), sui juris (of age; independent), wali (guardian), wilayah (guardianship)

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399 Feasibility of Implementing Digital Healthcare Technologies to Prevent Disease: A Mixed-Methods Evaluation of a Digital Intervention Piloted in the National Health Service

Authors: Rosie Cooper, Tracey Chantler, Ellen Pringle, Sadie Bell, Emily Edmundson, Heidi Nielsen, Sheila Roberts, Michael Edelstein, Sandra Mounier Jack

Abstract:

Introduction: In line with the National Health Service’s (NHS) long-term plan, the NHS is looking to implement more digital health interventions. This study explores a case study in this area: a digital intervention used by NHS Trusts in London to consent adolescents for Human Papilloma Virus (HPV) immunisation. Methods: The electronic consent intervention was implemented in 14 secondary schools in inner city, London. These schools were statistically matched with 14 schools from the same area that were consenting using paper forms. Schools were matched on deprivation and English as an additional language. Consent form return rates and HPV vaccine uptake were compared quantitatively between intervention and matched schools. Data from observations of immunisation sessions and school feedback forms were analysed thematically. Individual and group interviews were undertaken with implementers parents and adolescents and a focus group with adolescents were undertaken and analysed thematically. Results: Twenty-eight schools (14 e-consent schools and 14 paper consent schools) comprising 3219 girls (1733 in paper consent schools and 1486 in e-consent schools) were included in the study. The proportion of pupils eligible for free school meals, with English as an additional language and students' ethnicity profile, was similar between the e-consent and paper consent schools. Return of consent forms was not increased by the implementation of the e-consent intervention. There was no difference in the proportion of pupils that were vaccinated at the scheduled vaccination session between the paper (n=14) and e-consent (n=14) schools (80.6% vs. 81.3%, p=0.93). The transition to using the system was not straightforward, whilst schools and staff understood the potential benefits, they found it difficult to adapt to new ways of working which removed some level or control from schools. Part of the reason for lower consent form return in e-consent schools was that some parents found the intervention difficult to use due to limited access to the internet, finding it hard to open the weblink, language barriers, and in some cases, the system closed a few days prior to sessions. Adolescents also highlighted the potential for e-consent interventions to by-pass their information needs. Discussion: We would advise caution against dismissing the e-consent intervention because it did not achieve its goal of increasing the return of consent forms. Given the problems embedding a news service, it was encouraging that HPV vaccine uptake remained stable. Introducing change requires stakeholders to understand, buy in, and work together with others. Schools and staff understood the potential benefits of using e-consent but found the new ways of working removed some level of control from schools, which they found hard to adapt to, possibly suggesting implementing digital technology will require an embedding process. Conclusion: The future direction of the NHS will require implementation of digital technology. Obtaining electronic consent from parents could help streamline school-based adolescent immunisation programmes. Findings from this study suggest that when implementing new digital technologies, it is important to allow for a period of embedding to enable them to become incorporated in everyday practice.

Keywords: consent, digital, immunisation, prevention

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398 Communicative Language between Doctors and Patients in Healthcare

Authors: Anita Puspawati

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A failure in obtaining informed consent from patient occurs because there is not effective communication skill in doctors. Therefore, the language is very important in communication between doctor and patient. This study uses descriptive analysis method, that is a method used mainly in researching the status of a group of people, an object, a condition, a system of thought or a class of events in the present. The result of this study indicates that the communicative language between doctors and patients will increase the trust of patients to their doctors and accordingşy, patients will provide the informed consent voluntarily.

Keywords: communicative, language, doctor, patient

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397 A Critique of Contemporary Sexual Liberation: A Third Way Analysis

Authors: Sydelle Barreto

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Sexual liberation has been thought of as a movement, an idea, and an antithesis of material oppression. Within feminism it has consistently resisted definition - different feminist schools of thought had entirely different constructions of what liberated feminine sexuality could look like and how we might get there. This paper will critique the current definition of sexual liberation as being limited and carceral in its perspectives of sexual assault and extremely reductive in its imaginings of sexual liberation. The ultimate goal of this assessment is to potentially outline what true sexual liberation might look like in a way that is inclusive but not ignorant of the realities of the patriarchy. The first critique of sexual liberation included in the paper centers around the limits of consent, carceral feminism and sexual subjectivity. The argument will build off the traditionally sex-negative critiques of consent as being limited in scope by explaining how a lack of nuance is even more dangerous to victims of sexual violations. The discussion will also expand an interrogant of consent to an interrogation of wantedness and desire. If we understand that critiquing the conditions of consent is important, we must also critique the way patriarchy and compulsory sexuality have affected desire. Using the aforementioned concept of compulsory sexuality, the paper will argue that while sexual liberation has begun to include queer and transgender individuals, it is still overwhelmingly allonormative. Sex positivity and its opponents both fail to include asexuality. This ultimately leads to a conflation of sexual liberation with genuine material liberation. Just as we cannot divorce our constructions of sexual liberation from the realities of the patriarchy and rape culture, we should consider compulsory sexuality as its own system of social regulation. The conclusion will begin to construct an alternative vision of sexual liberation, leveraging concepts of sexual subjectivity, including a rejection of carceral feminism as a response to sexual violence, and finally, leading to the beginnings of a deconstruction of compulsory sexuality. The paper concludes with a vision of sexual liberation that does not confuse itself with material liberation or mere sexual oppression, but rather a key way stops on the road to constructing our most authentic sexual selves.

Keywords: feminism, sexual assault, sexual liberation, consent

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396 Assessing the Informed Consent Practices during Normal Vaginal Delivery Process and Immediate Postpartum Care in Tertiary Level Hospitals of Bangladesh

Authors: Md. Abdul Karim, Syed Imran Ahmed, Pandora T. Hardtman

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Informed consent is one of the basic human and ethical rights for childbearing women. It plays a central role in promoting informed decision making between patients and service providers during the labor process. It gives mothers rights to accept or reject any examination and/or procedure, increases the respect and dignity of the mother during pregnancy, delivery and postpartum care. To assess the practices of this right during normal vaginal delivery and immediate postpartum care in tertiary level hospital setting in Bangladesh, a quantitative study with cross-sectional design was conducted in Dhaka Medical College & Hospital (DMCH) and Sir Salimullah Medical College & Mitford Hospital (SSMCH) in Dhaka in November 2015. A prevalence-based sample size of 190 was calculated where prevalence, confidence interval and level of significance were at 9.7%, 98% and 5% respectively. The respondents were the mothers who gave normal vaginal childbirth within past 24 hours and received postpartum care there. They were selected through systematic random sampling technique and their face-to-face interview of 190 mothers was done using a structured questionnaire. Data were entered into the spreadsheet (MS Excel 2013 version) and descriptive analysis of findings was done. The result shows the complete absence of informed consent practices and mostly absence of consented care such as right to information, respect for choices of preferences for examination and/or procedure of childbearing women. Although 95% of the mothers were informed that they were being proceeded with normal vaginal delivery, their choice of preference was absent during the process. Only consent (not informed consent) was taken from 50%-72% mothers for examination (except breast examination ‘0%’) and 8%-83% for any procedures during postpartum care. Only one-ninth (11%) of the mothers could ask service providers regarding the services they received. No consent was taken from 3% of the mothers- neither in the labor process nor in postpartum care. This current practice doesn’t comply with the Respectful Maternity Care (RMC) Charter 2011. The issue is not even clarified in the current Standard Clinical Management Protocols of the country. So, improvement of the existing protocol and increased awareness are essential to address this right of child-bearing women and to practice it during normal vaginal delivery and postpartum care.

Keywords: informed consent, normal vaginal delivery, respectful maternity care, tertiary level hospital

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395 Awareness and Willingness of Signing 'Consent Form in Palliative Care' in Elderly Patients with End Stage Renal Disease

Authors: Hsueh Ping Peng

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End-stage renal disease most commonly occurs in the elderly population. Elderly people are approaching the end of their lives, and when facing major life-threatening situations, apart from aggressive medical treatment, they can also choose treatment methods such as hospice care to improve their quality of life. The purpose of this study was to investigate factors associated with the awareness and willingness to sign hospice and palliative care consent forms in elderly with end-stage renal disease. This study used both quantitative, cross-sectional study designs. In the quantitative section, 110 elderly patients (aged 65 or above) with end-stage renal disease receiving conventional hemodialysis were recruited as study participants from a medical center in Taipei City. Data were collected using structured questionnaires. Study tools included basic demographic data, questionnaires on the awareness and perception of hospice and palliative care, etc. After collecting the data, data analysis was conducted using SPSS 20.0 statistical software, including descriptive statistics, chi-square test, logistic regression, and other inferential statistics. The results showed that the average age of participants was 71.6 years old, more males than females, average years of dialysis was 6.1 years and most subjects rated their self-perceived health status as fair. Results of the study are summarized as follows: Elderly people with end-stage renal disease did not have sufficient knowledge and awareness about hospice and palliative care. Influencing factors included level of education, marital status, years of dialysis and age, etc. Demographic factors influencing the signing of consent forms included gender, marital status, and age, which all showed significant impacts. Factors taken into consideration when signing consent forms included awareness of hospice care, understanding the relevant definitions of hospice care, and understanding that consent may be modified or cancelled at any time; it was predicted that people who knew more about ways to receive hospice care or more related definitions were more willing to sign the consent forms. In the qualitative study section, 10 participants who signed the consent form, five male, and 5 female, between the ages of 65-90, have completed the semi-structured interviews. Analysis of the interviews revealed six themes: (1) passing away peacefully, (2) autonomy on arrangements of life and death, (3) unwillingness to increase family and social burden, (4) friends and relatives’ experience influencing the decision to give consent, (5) sharing information to facilitate the giving of consent, (6) facing each day with ease, to reflect the experience and factors of consideration for elderly with end-stage renal disease when signing consent forms. The results of this study provides the awareness, thoughts and feelings of elderly with end-stage renal disease on signing consent forms, and serve as a future reference for the dialysis unit to enhance the promotion of hospice and palliative care and related caregiving measures, thereby improving the quality of life and care for elderly people with end-stage renal disease.

Keywords: end-stage renal disease, hemodialysis, hospice and palliative care, awareness, willingness

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394 Sexual Consent and Persons with Psychosocial Disabilities: Exploring Sexual Rights under Indian Laws

Authors: Sachin Sharma

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Sexual consent is integral to every sexual relationship. It is a process to facilitate sexual autonomy and bodily integrity. It assures complete sexual personhood and allows an individual to explore her sexual expressions independently. But the said proposition is not true for people with psychosocial disabilities. Generally, they are considered seraphic or mephistophelic and denied access to sexual autonomy. This result in institutionalizing the sexuality of disabled persons, where the eugenics-ableist narrative defines assessment and access to consent. This way, sexuality and disability are distanced apart. It is primarily due to the stigmatized socio-cultural constructs of sexuality that define sex within a “standard” and “charmed” circle. Such stigmatized expression influences the law, as it considers people with psychosocial disabilities incapable of sexual consent. The approach of legal institutions is very narrow towards interpreting their sexual rights. It echoes the modernist-ableism and strangulates the sexual choices. This way, it reflects the repressive model of sex and denies space to people with psychosocial disabilities. Moreover, judicial courts follow old and conservative methods while dealing with sexual issues. For instance, courts still practice the “standardized” norm of intelligence quotient (IQ) for determining the credibility of persons with psychosocial disabilities. Further, there is still doubt about assistive communicative techniques. This paper will try to question the normative structure of sexual consent and related laws while specifically addressing the issues of sex as desire and abuse. Considering the commitment to the United Nations Convention on the Rights of Persons with Disabilities (herein referred to as UNCRPD) and common law experience, the paper will draw a comparative study on the legal position of sexual rights in India. The paper will also analyze the role of UNCRPD in addressing sexual rights. The author will examine the position of sexual rights of people with psychosocial disabilities after the drafting of UNCRPD and specific state laws. The paper primarily follows the doctrinal method.

Keywords: sexual autonomy, institutionalized choices, overregulated laws, violation of individuality

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393 The Problems with the Amendment of a Living Trust in South Africa

Authors: Rika van Zyl

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It was ruled that an inter vivos trust must be amended according to the rules of the stipulatio alteri, or ‘contract in favour of a third party’, that South African adopted from its Roman-Dutch common law. The application of the principles of the stipulatio alteri on the inter vivos trust has developed in case law to imply that once the beneficiary has accepted benefits, he becomes a party to the contract. This consequently means that he must consent to any amendments that the trustees want to make. This poses practical difficulties such as finding all the beneficiaries that have accepted to sign the amendment that the trustees would want to circumvent in administering the trust. One of the questions relating to this issue is, however, whether the principles of the stipulatio alteri are correctly interpreted and consequently applied to the inter vivos trust to mean that the beneficiaries who accepted must consent to any amendment. The subsequent question relates to the rights the beneficiary receives upon acceptance. There seems to be a different view of what a vested right or a contingent right of the beneficiary means in relation to the inter vivos trust. These rights also have an impact on the amendment of a trust deed. Such an investigation and refining of the interpretation of the stipulatio alteri’s application on the inter vivos trust may result in solutions to circumvent the adverse effects of getting the beneficiary’s consent for amendments.

Keywords: inter vivos trust, stipulatio alteri, amendment, beneficiary rights

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392 Ethics Can Enable Open Source Data Research

Authors: Dragana Calic

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The openness, availability and the sheer volume of big data have provided, what some regard as, an invaluable and rich dataset. Researchers, businesses, advertising agencies, medical institutions, to name only a few, collect, share, and analyze this data to enable their processes and decision making. However, there are important ethical considerations associated with the use of big data. The rapidly evolving nature of online technologies has overtaken the many legislative, privacy, and ethical frameworks and principles that exist. For example, should we obtain consent to use people’s online data, and under what circumstances can privacy considerations be overridden? Current guidance on how to appropriately and ethically handle big data is inconsistent. Consequently, this paper focuses on two quite distinct but related ethical considerations that are at the core of the use of big data for research purposes. They include empowering the producers of data and empowering researchers who want to study big data. The first consideration focuses on informed consent which is at the core of empowering producers of data. In this paper, we discuss some of the complexities associated with informed consent and consider studies of producers’ perceptions to inform research ethics guidelines and practice. The second consideration focuses on the researcher. Similarly, we explore studies that focus on researchers’ perceptions and experiences.

Keywords: big data, ethics, producers’ perceptions, researchers’ perceptions

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391 Parents’ Perceptions of the Consent Arrangements for Dental Public Health Programmes in North London: A Qualitative Exploration

Authors: Charlotte Jeavons, Charitini Stavropoulous, Nicolas Drey

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Background: Over one-third of five-year-olds and almost half of all eight-year-olds in the UK have obvious caries experience that can be detected by visual screening techniques. School-based caries preventions programs to apply fluoride varnish to young children’s teeth operate in many areas in the UK. Their aim is to reduce dental caries in children. The Department of Health guidance (2009) on consent states information must be provided to parents to enable informed autonomous decision-making prior to any treatment involving their young children. Fluoride varnish schemes delivered in primary schools use letters for this purpose. Parents are expected to return these indicating their consent or refusal. A large proportion of parents do not respond. In the absence of positive consent, these children are excluded from the program. Non-response is more common in deprived areas creating inequality. The reason for this is unknown. The consent process used is underpinned by the ethical theory of deontology that is prevalent in clinical dentistry and widely accepted in bio-ethics. Objective: To investigate parents’ views, understanding and experience of the fluoride varnish program taking place in their child’s school, including their views about the practical consent arrangements. Method: Schools participating in the fluoride varnish scheme operating in Enfield, North London, were asked to take part. Parents with children in nursery, reception, or year one were invited to participate via semi-structured interviews and focus groups. Thematic analysis was conducted. Findings: 40 parents were recruited from eight schools. The global theme of ‘trust’ was identified as the strongest influence on parental responses. Six themes were identified; protecting children from harm is viewed by parents as their role, parents have the capability to decide but lack confidence, sharing responsibility for their child’s oral health with the State is welcomed by a parent, existing relationships within parents’ social networks strongly influences consent decisions, official dental information is not communicated effectively, sending a letter to parents’ and excluding them from meeting dental practitioners is ineffective. The information delivered via a letter was not strongly identified by parents as influencing their response. Conclusions: Personal contact with the person(s) providing information and requesting consent has a greater impact on parental consent responses than written information provided alone. This demonstrates that traditional bio-ethical ideas about rational decision-making where emotions are transcended and interference is not justified unless preventing harm to an unaware person are outdated. Parental decision-making is relational and the consent process should be adapted to reflect this. The current system that has a deontology view of decision making at its core impoverishes parental autonomy and may, ultimately, increase dental inequalities as a result.

Keywords: consent, decision, ethics, fluoride, parents

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390 Islam, Forced Marriages and Pakistani Culture: An Analytical Overview

Authors: Naseem Akhter, Rozina Khattak, Arshad Munir

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The Islamic social and family system is very clear concerning will, choice, consent and negation of compulsion and force in human life. Marriage is not only a civil contract but also a religious and spiritual contract between spouse (man and woman), which allows them for each other to live gladly, joyfully and legally in the society. It is an immortal and perpetual association between man and woman, which is filled with sympathetic affection, kindness, compassion and security. Islam gives specific rights to parents and guardians to set up the marriage ceremony and get done it as a respectful family occasion, confer their blessing and advice for a life partner of their children. The rights of parents and guardians are summed up in the term of "Willayah”. Islam does not permit parents, guardians and other relatives to compel their children regarding the marriage of their choice, because the groom and the bride are the real parties of the contract. Therefore, their willingness is of prime importance in order to spend whole life with each other. The Holy Prophet (peace and blessings of Allah be upon him) prohibits forcing a virgin to marriage without her permission, whether this is her father or someone else. The right of free consent to choose a life partner is the basic right for the human which is God (Allah) gifted. Unfortunately, forced marriage is a common practice in Pakistani society that has no link with Islam. This article is being written in the same context.

Keywords: choice, consent, forced marriage, Islam, parents, spouse

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389 Obstruction to Treatments Meeting International Standards for Lyme and Relapsing Fever Borreliosis Patients

Authors: J. Luché-Thayer, C. Perronne, C. Meseko

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We reviewed how certain institutional policies and practices, as well as questionable research, are creating obstacles to care and informed consent for Lyme and relapsing fever Borreliosis patients. The interference is denying access to treatments that meet the internationally accepted standards as set by the Institute of Medicine. This obstruction to care contributes to significant human suffering, disability and negative economic effect across many nations and in many regions of the world. We note how evidence based medicine emphasizes the importance of clinical experience and patient-centered care and how these patients benefit significantly when their rights to choose among treatment options are upheld.  

Keywords: conflicts of interest, obstacles to healthcare accessibility, patient-centered care, the right to informed consent

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388 Willingness and Attitude towards Organ Donation of Nurses in Taiwan

Authors: ShuYing Chung, Minchuan Huang, Iping Chen

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Taking the medical staff in an emergency ward of a medical center in Central Taiwan as the research object, the questionnaire data were collected by anonymous and voluntary reporting methods with structured questionnaire to explore the actual situation, willingness and attitude of organ donation. Only 80 valid questionnaires were collected. Among the 8 questions, the average correct rate was 5.9 + 1.2, and the correct rate was 73.13%. The willingness of organ donation that 7.5% of the people are not willing; 92.5% of the people are willing, of which 62.5% have considered but have not yet decided; 21.3% are willing but have not signed the consent of organ donation; They have signed the consent of organ donation 8.7%. The average total score (standard deviation) of attitude towards organ donation was 36.2. There is no significant difference between the demographic variables and the awareness and willingness of organ donation, but there is a significant correlation between the marital status and the attitude of organ donation.

Keywords: clinical psychology, organ donation, doctors affecting psychological disorders, commitment

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387 Consent, Agency and Abuse: Intimate Partner Violence in the Indian Context: A Primary Study Based on Working Women from Lower Income Groups in Smart Cities across North India

Authors: Shirin Abbas, Sandeep Kumar Dubey

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Intimate partner violence (IPV) is one of the most common forms of gender-based violence (GBV) and is classified as discrimination on the basis of gender. Article 2 of the non-binding UN Declaration on the Elimination of Violence against Women (DEVAW). This was adopted in 1993 as the first international pronouncement regarding violence against women, including physical, sexual, and psychological violence in the family (i.e., domestic violence, marital rape, battery, statutory rape, rape by male members of the family, etc.) While crime against women continues unabated, the Indian government has strongly refuted the 2018 study by the Thomson Reuters Foundation categorizing India as a risky country for women due to the high risk of sexual violence and being forced into slave labour, according to a poll of global experts. This paper has explored consent, agency, and abuse through the lens of intimate partner violence among women from lower income groups in smart cities in the state of Uttar Pradesh, India. Using focused mapping, the paper has explored the situation on IPV internationally and studied the status of working women from lower income groups to ascertain if their lot was any different where IPV was concerned to study. The findings of the study also vindicate global reports which rate India as a country unsafe for women, even within marriage.

Keywords: consent and agency, domestic violence, gender based violence GBV, intimate partner violence IPV

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386 The Conundrum of Marital Rape in Malawi: The Past, the Present and the Future

Authors: Esther Gumboh

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While the definition of rape has evolved over the years and now differs from one jurisdiction to another, at the heart of the offence remains the absence of consent on the part of the victim. In simple terms, rape consists in non-consensual sexual intercourse. Therefore, the core issue is whether the accused acted with the consent of the victim. Once it is established that the act was consensual, a conviction of rape cannot be secured. Traditionally, rape within marriage was impossible because it was understood that a woman gave irrevocable consent to sex with her husband throughout the duration of the marriage. This position has since changed in most jurisdictions. Indeed, Malawian law now recognises the offence of marital rape. This is a victory for women’s rights and gender equality. Curiously, however, the definition of marital rape endorsed differs from the standard understanding of rape as non-consensual sex. Instead, the law has introduced the concept of unreasonableness of the refusal to engage in sex as a defence to an accused. This is an alarming position that undermines the protection sought to be derived from the criminalisation of rape within marriage. Moreover, in the Malawian context where rape remains an offence only men can commit against women, the current legal framework for marital rape perpetuates the societal misnomer that a married woman gives a once-off consent to sexual intercourse by virtue of marriage. This takes us back to the old common law position which many countries have moved away from. The present definition of marital rape under Malawian law also sits at odd with the nature of rape that is applicable to all other instances of non-consensual sexual intercourse. Consequently, the law fails to protect married women from unwanted sexual relations at the hands of their husbands. This paper critically examines the criminalisation of marital rape in Malawi. It commences with a historical account of the conceptualisation of rape and then looks at judgments that rejected the validity of marital rape. The discussion then moves to the debates that preceded the criminalisation of marital rape in Malawi and how the Law Commission reasoned to finally make a recommendation in its favour. Against this background, the paper analyses the legal framework for marital rape and what this means for the elements of the offence and defences that may be raised by an accused. In the final analysis, this contribution recommends that there is need to amend the definition of marital rape. Better still, the law should simply state that the fact of marriage is not a defence to a charge of rape, or, in other words, that there is no marital rape exemption. This would automatically mean that husbands are subjected to the same criminal law principles as their unmarried counterparts when it comes to non-consensual sexual intercourse with their wives.

Keywords: criminal law, gender, Malawi, marital rape, rape, sexual intercourse

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385 Decision Making Regarding Spouse Selection and Women's Autonomy in India: Exploring the Linkage

Authors: Nivedita Paul

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The changing character of marriage be it arranged marriage, love marriage, polygamy, informal unions, all signify different gender relations in everyday lives. Marriages in India are part and parcel of the kinship and cultural practices. Arranged marriage is still the dominant form of marriage where spouse selection is the initiative and decision of the parents; but its form is changing, as women are now actively participating in spouse selection but with parental consent. Spouse selection related decision making is important because marriage as an institution brings social change and gender inequality; especially in a women’s life as marriages in India are mostly patrilocal. Moreover, the amount of say in spouse selection can affect a woman’s reproductive rights, domestic violence issues, household resource allocation, communication possibilities with the spouse/husband, marital life, etc. The present study uses data from Indian Human Development Survey II (2011-12) which is a nationally representative multitopic survey that covers 41,554 households. Currently, married women of age group 15-49 in their first marriage; whose year of marriage is from 1970s to 2000s have been taken for the study. Based on spouse selection experiences, the sample of women has been divided into three marriage categories-self, semi and family arranged. Women in self arranged or love marriage is the sole decision maker in choosing the partner, in semi arranged marriage or arranged marriage with consent both parents and women together take the decision, whereas in family arranged or arranged marriage without consent only parents take the decision. The main aim of the study is to find the relationship between spouse selection experiences and women’s autonomy in India. Decision making in economic matters, child and health related decision making, mobility and access to resources are taken to be proxies of autonomy. Method of ordinal regression has been used to find the relationship between spouse selection experiences and autonomy after marriage keeping other independent variables as control factors. Results show that women in semi arranged marriage have more decision making power regarding financial matters of the household, health related matters, mobility and accessibility to resources, when compared to women in family, arranged marriages. For freedom of movement and access to resources women in self arranged marriage have the highest say or exercise greatest power. Therefore, greater participation of women (even though not absolute control) in spouse selection may lead to greater autonomy after marriage.

Keywords: arranged marriage, autonomy, consent, spouse selection

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384 From Forked Tongues to Tinkerbell Ears: Rethinking the Criminalization of Alternative Body Modification in the UK

Authors: Luci V. Hyett

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The criminal law of England and Wales currently deems that a person cannot consent to the infliction of injury upon their own body, where the level of harm is considered to be Actual or Grevious. This renders the defence of consent of the victim as being unavailable to those persons carrying out an Alternative Body Modification procedure. However, the criminalization of consensual injury is more appropriately deemed as being categorized as an offense against public morality and not one against the person, which renders the State’s involvement in the autonomous choices of a consenting adult, when determining what can be done to one’s own body, an arbitrary one. Furthermore, to recognise in law that a person is capable of giving a valid consent to socially acceptable cosmetic interventions that largely consist of procedures designed to aesthetically please men and, not those of people who want to modify their bodies for other reasons means that patriarchal attitudes are continuing to underpin public repulsion and inhibit social acceptance of such practices. Theoretical analysis will begin with a juridical examination of R v M(B) [2019] QB 1 where the High Court determined that Alternative Body Modification was not a special category exempting a person so performing from liability for Grevious Bodily Harm using the defence of consent. It will draw from its reasoning which considered that ‘the removal of body parts were medical procedures being carried out for no medical reason by someone not qualified to carry them out’ which will form the basis of this enquiry. It will consider the philosophical work of Georgio Agamben when analysing whether the biopolitical climate in the UK, which places the optimization of the perfect, healthy body at the centre of political concern can explain why those persons who wish to engage in Alternative Body Modification are treated as the ‘Exception’ to that which is normal using the ‘no medical reason’ canon to justify criminalisation, rather than legitimising the industry through regulation. It will consider, through a feminist lens, the current conflict in law between traditional cosmetic interventions which alter one’s physical appearance for socially accepted aesthetic purposes such as those to the breast, lip and buttock and, modifications described as more outlandish such as earlobe stretching, tooth filing and transdermal implants to create horns and spikes under the skin. It will assert that ethical principles relating to the psychological impact of body modification described as ‘alternative’ is used as a means to exclude person’s seeking such a procedure from receiving safe and competent treatment via a registered cosmetic surgeon which leads to these increasingly popular surgery’s being performed in Tattoo parlours throughout the UK as an extension to other socially acceptable forms of self-modification such as piercings. It will contend that only by ‘inclusive exclusion’ will those ‘othered’ through ostracisation be welcomed into the fold of normality and this can only be achieved through recognition of alternative body modification as a legitimate cosmetic intervention, subject to the same regulatory framework as existing practice. This would assist in refocusing the political landscape by erring on the side of liberty rather than that of biology.

Keywords: biopolitics, body modification, consent, criminal law

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383 Autonomy in Pregnancy and Childbirth: The Next Frontier of Maternal Health Rights Advocacy

Authors: Alejandra Cardenas, Ona Flores, Fabiola Gretzinger

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Since the 1990s, legal strategies for the promotion and protection of maternal health rights have achieved significant gains. Successful litigation in courts around the world have shown that these rights can be judicially enforceable. Governments and international organizations have acknowledged the importance of a human rights-based approach to maternal mortality and morbidity, and obstetric violence has been recognized as a human rights issue. Despite the progress made, maternal mortality has worsened in some regions of the world, while progress has stagnated elsewhere, and mistreatment in maternal care is reported almost universally. In this context, issues of maternal autonomy and decision-making during pregnancy, labor, and delivery as a critical barrier to access quality maternal health have been largely overlooked. Indeed, despite the principles of autonomy and informed consent in medical interventions being well-established in international and regional norms, how they are applied particularly during childbirth and pregnancy remains underdeveloped. National and global legal standards and decisions related to maternal health were reviewed and analyzed to determine how maternal autonomy and decision-making during pregnancy, labor, and delivery have been protected (or not) by international and national courts. The results of this legal research and analysis lead to the conclusion that a few standards have been set by courts regarding pregnant people’s rights to make choices during pregnancy and birth; however, most undermine the agency of pregnant people. These decisions recognize obstetric violence and gender-based discrimination, but fail to protect pregnant people’s autonomy, privacy, and their right to informed consent. As current human rights standards stand today, maternal health is the only field in medicine and law in which informed consent can be overridden, and patients can be forced to submit to treatments against their will. Unconsented treatment and loss of agency during pregnancy and childbirth can have long-term physical and mental impacts, reduce satisfaction and trust in health systems, and may deter future health-seeking behaviors. This research proposes a path forward that focuses on the pregnant person as an independent agent, relying on the doctrine of self-determination during pregnancy and childbirth, which includes access to the necessary conditions to enable autonomy and choice throughout pregnancy and childbirth as a critical step towards our approaches to reduce maternal mortality, morbidity, and mistreatment, and realize the promise of access to quality maternal health as a human right.

Keywords: autonomy in childbirth and pregnancy, choice, informed consent, jurisprudential analysis

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382 Child-Friendly Cities: A Child's Participation in the Local Government to Improve the Status of Rights of the Child

Authors: Asma Khalid

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Children’s drawings are unique as children are. Children manifest their happiness, sadness, future dreams, likes, dislikes through drawings. Research with children aged 8-12 was conducted in 2017 in which it was asked to them ‘what they think about child-friendly cities?’ The focus was to get ideas from children about the cities in which they live and what they want in their cities. The research was conducted in different private schools. Children were accessed through teachers and principals of the schools (the gatekeepers). Consent forms were developed for children which contained information about the research project and their consent was taken on paper. It was ensured that children are not forced to take part in the research and they can leave the research whenever they want, without informing anyone. The qualitative participatory approach was taken where children were given papers and colors to draw their ideas. During the research, it was found that children are interested in showing their emotions and liking through drawing as this medium seems easy and comfortable to them as compared to have the individual face to face interviews or participate in surveys. However, the clarity of the ideas presented in the drawings was discussed at length with children in their school’s premises. Results of the research show that children like to live in clean, green places which are also safe for them. Furthermore, they want to live with their families and want to have recreational activities including parks in their nearby vicinity.

Keywords: qualitative participative research clean, children, drawing, clean, green and protected place, family

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381 The Rendering of Sex-Related Expressions by Court Interpreters in Hong Kong: A Corpus-Based Approach

Authors: Yee Yan Crystal Kwong

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The essence of rape is the absence of consent to sexual intercourse. Yet, the definition of consent is not absolute and allows for subjectivity. In this case, the accuracy of oral interpretation becomes very important as the narratives of events and situation, as well as the register and style of speakers would influence the juror decision making. This paper first adopts a corpus-based approach to investigate how court interpreters in Hong Kong handle expressions that refer to sexual activities. The data of this study will be based on online corpus :From legislation to translation, from translation to interpretation: The narrative of sexual offences. The corpus comprises the transcription of five separate rape trials and all of these trials were heard with the presence of an interpreter. Since there are plenty of sex-related expressions used by witnesses and defendants in the five cases, emphasis will be put on those which have an impact on the definition of rape. With an in-depth analysis of the interpreted utterances, different interpreting approaches will be identified to observe how interpreters retain the intended meanings. Interviews with experienced court interpreters will also be conducted to revisit the validity of the traditional verbatim standard. At the end of this research, various interpreting approaches will be compared and evaluated. A redefinition of interpreters' institutional role, as well as recommendations for interpreting learners will be provided.

Keywords: court interpreting, interpreters, legal translation, slangs

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380 Horse Race Model of Communication

Authors: Ariyaratna Athugala

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Mass media play a significant role in democratic societies. The Political Economy of the Mass Media postulates that elite media interlock with other institutional sectors in ownership, and editorial management effectively circumscribing their ability to remain analytically detached from other dominant institutional sectors. The production of meaning in news discourse is not valued neutral, but part of a larger process of presenting a hegemonic understanding of the world to audiences as the “production of consent.” The horse race model argues that “the raw material of news” pressures six bands that ultimately shape the news audiences receive. The six bands are as follows: Crown piece (raw material), brow band (professionalism), throat latch (gatekeeper), a bit (construction), nose band (perception), and reins (ownership). dThe horse race model suggests that media ultimately serve to “manufacture consent” for a range of self-serving elite opinion options. These bands determine what events are deemed newsworthy, how they are covered, where they are placed within the media and how much coverage they receive. Highly descriptive in nature, the horse race model of communication is concerned with the question of whether media can be seen to play a hegemonic role in the society oriented towards legitimization, hegemonic pressures and ideological construction.

Keywords: hegemonic pressures, horse race, ideological construction, six bands

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379 Implications on Informed Consent of Information Available to Patients on the Internet Regarding Hip and Knee Osteoarthritis

Authors: R. W. Walker, J. M. Lynch, K. Anderson, R. G. Middleton

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Hip and knee arthritis are two of the commonest conditions that result in elective orthopaedic outpatient referral. At clinic appointments advice given regarding lifestyle modifications or treatment options may not be fully understood by patients. The majority of patients now use the internet to research their condition and use this to inform their decision about treatments. This study assessed the quality of patient information regarding hip and knee arthritis. To assess the quality of patient information regarding knee and hip arthritis available on the internet. Two internet searches were carried out one month apart using the search terms “knee arthritis” and “hip arthritis” on Google, a search engine that accounts for over 90% or internet searches in the UK. Sites were evaluated using the DISCERN instrument, a validated tool for measuring the quality of consumer health information. The first 50 results for each search were analysed by two different observers and discrepancies in scores were reviewed by both observers together and a score was agreed upon. In total 200 search result websites were assessed, of which 84 fulfilled the inclusion criteria. 53% (n=44) were funded directly by commercial healthcare businesses and of these, 70% (n=31) were funded by a surgeon/hospital promoting end-user purchase of surgical intervention. Overall 35% (n=29) websites were “for-profit” information websites where funding was from advertising revenues from pharmaceutical and prosthesis companies. 81% (n=67) offered information about surgical treatments however only 43% (n=36) mentioned the risk of complications of surgery. 67% (n=56) did not have any reference to sources for the information they detailed and 57% (n=47) had no apparent date for the production of the information they offered. Overall 17% (n=14) of websites were judged as being of high quality, with 29% (n=24) being of moderate quality and 54% (n=45) being of low quality. The quality of health information regarding hip and knee arthritis on the internet is highly variable and the majority of websites assessed were of poor quality. A preponderance of websites were funded by a commercial surgical service offering athroplasty at consumer cost, with a further third being funded indirectly via advertising revenues from commercial businesses. The vast majority of websites only mentioned surgery as a treatment and nearly half of all websites did not mention the risks or complications of surgical intervention at all. This has implications for the consent process. As such, Clinicians should be aware of the heterogeneous nature of patient information on the internet and be prepared to advise their patients about good quality websites where further reliable information can be sought.

Keywords: hip osteoarthritis, informed consent, knee osteoarthritis, patient information

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378 Obligation, the Shifting Nature of Physician-Patient Relationship, and the Basic Healthcare Reform in Mainland China

Authors: Jia Liu

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This article explores the shifting nature of physician-patient relationship in mainland China. Specifically, it takes the physician-patient relationship during the barefoot doctor program in 1968-1978, the marketization of healthcare services in 1978-2002, and the healthcare reform in 2003-2020 as three typical historical periods, illustrating how the nature of the physician-patient relationship has changed over time in mainland China. Drawing on recent jurisprudential literature that emphasizes the roles and functions done by and through obligation rather than right, it explores how the obligations of physicians and patients along with the implementation of informed consent, marketization of the healthcare system, and the basic healthcare reform have affected their relationship. One key feature of this article is that it analyzes the ways in which commodification and decommodification of healthcare have defined and in many different ways have determined the expectations and practices of physicians and patients, which illustrates how the trust between physicians and patients threatens to collapse and the bond between the citizen and the state fails to be firmly established in the mainland Chinese healthcare context. It also pays special attention to the role played by law and legal institutions—for instance, the implementation of informed consent and the liability law—in being complicit in facilitating the decoupling of the practices of physicians and patients from their ethical senses of obligation and undermining the bond (the trust relationship) between them.

Keywords: healthcare, marketization, physician-patient relationship, sense of obligation

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