Indiana University-Purdue University Indianapolis (IUPUI) / The purpose of this study is to examine the informed consent (IC) procedure as it was experienced by patients who had undergone a de novo transjugular intrahepatic portosystemic shunt (TIPS), chemoembolization (TACE), or radioembolization (TARE) procedure in an Interventional Radiology (IR) Department. The three main study aims and a fourth exploratory aim are as follows: (1) Describe how patients who underwent a de novo TIPS, TACE, or TARE procedure in an IR Department described the IC procedure; (2) Describe what information patients who underwent a de novo TIPS, TACE, or TARE procedure in an IR Department recalled being told during the IC procedure; (3) Describe the satisfaction of patients who underwent a de novo TIPS, TACE, or TARE procedure in an IR Department with the IC procedure; and (4) Explore how the IC experiences of patients who underwent a de novo TIPS, TACE, or TARE procedure in an IR Department differed according to their levels of health literacy. Using a qualitative descriptive design, participants were recruited from an IR department that performed these procedures. A total of 14 participants were interviewed about their IC experiences and the Newest Vital Sign (NVS) Health Literacy assessment was administered. The participants described the IC procedure by discussing the staff they encountered, their feelings during the visit, the support persons who accompanied them, and the decisions they made about the procedure. The participants recalled being told about how their procedure would be performed, the care they would need, and the benefits and risks of the procedure. Most were satisfied with the information received during the IC procedure and found the information consistent with how they experienced the procedure. A few participants would have liked more visual materials, addition details about the procedure, simpler language, or more explanation of the medical terminology. No apparent differences in the IC experience could be attributed to health literacy. These findings suggest that persons’ experiences during the IC process are multi-faceted and affected by their emotions and concerns and the nature of their encounters with their healthcare providers.

MSc (Med) (Bioethics and Health Law), Faculty of Health Sciences, University of the Witwatersrand / Parental Consent or Refusal to Consent to HIV Testing in Children The acquired immune deficiency syndrome (AIDS) continues to represent the greatest infectious threat to humans of all time. It is estimated that some 33 million people are currently infected with the causative organism, the human immunodeficiency virus (HIV). More than 2 million of these are children. The AIDS epidemic now has its epicenter in sub-Saharan Africa where 75% of deaths occur. The treatment of AIDS with antiretroviral drugs (ARVs) has changed the outcome from inevitably fatal over months to years, to a chronic but manageable condition. Adherence to treatment is essential for maintaining good health and avoiding the development of resistance. Young children with HIV infection usually obtain the virus from their infected mother at, or about the time of birth or via breast milk. Prevention of mother to child infection (PMTCT) is possible through the use of ARVs and this has resulted in a dramatic decrease in infected children in the developed world. Poor provision and uptake of PMTCT in the developing world means that many children are still being infected. In these environments, over 60% of the children who die are infected. Treating these children with ARVs will usually prevent death and return the child to a good quality of life in the family. It is necessary to test the child for infection before embarking on life-long complex treatment and this is done by testing blood or saliva for the virus or antibodies to the virus. A positive test in the child is usually a proxy for a positive test in the mother and this obviously has profound implications for her life. In all infants suspected of infection, a test is advised. In the Rahima Moosa Mother & Child Hospital about 10-15% of mothers refuse testing for their infants. These children are therefore denied the opportunity for life-saving treatment. This essay discusses the reasons why mothers may refuse HIV testing for their infants and explores the possible ethical choices and responses of healthcare workers to this refusal.

In this paper I evaluate how storytelling and gameplay in interaction design can be used to broaden the view on consent communication among adolescents. There are varying definitions of how sexual consent should be communicated. Among them are the advocacy model, “no means no”, and affirmative consent, “yes means yes”. However research shows that people use non-verbal communication cues more often that verbal ones. Thus, I created the design probe, ‘Nosy Neighbours’ that displays a wider range of communication cues. The design probe does this by using storytelling and gameplay. To incorporate the perspective of adolescents during the design process pastiche scenarios were used. Since the use pf pastiche scenarios in HCI design is relatively unstudied, this paper also examines how pastiche scenarios can be used as a design tool. Additionally, the paper explores how pastiche scenarios can be used in evaluating a design with users. The study found that using gameplay to explore intimate topics like consent can be a good tool to start conversations among adolescents, according to those working youth. ‘Nosy Neighbours’ provided a neutral way to bring up the topic of consent. The storytelling aspect was found to be able to add a realistic element for the uses to become more engaged with the material. When using pastiche scenarios to evaluate a design, participants that are familiar with the work with pastiche is based on will use the entire context of the work in their evaluation, while participants unfamiliar with the original work are restricted to the pastiche scenario. Both cases, however, bring valuable data for design evaluation. Finally, as a designer, using pastiche scenarios that are based on familiar works, is a formidable tool to incorporate user perspectives throughout the process. / I denna studie utvärderar jag hur storytelling och spel I interaktionsdesign kan användas för att skapa en bredare syn på samtyckeskommunikation bland ungdomar. Det finns en rad olika definitioner på hur sexuellt samtycke bör kommuniceras. Bland dessa finns den så kallade ’advocacy model’, ”nej betyder nej”, och ’affirmative consent’, ”ja betyder ja”. Dock visar studier att folk använder icke-.verbal kommunikation oftare än verbal kommunikation. Således skapade jag designen ’Nosy Neighbour’. Som visar på ett brett spann av kommunikationssätt. Designen gör detta genom att använda storytelling och spel. För att få tillgång till ungdomars perspektiv under designprocessen användes pastischscenarier. Då pastischscenarier inte studerats mycket i människa-datainteraktion, undersöker denna studie även hur pastischscenarier kan användas som ett designverktyg. Tilläggsvis, undersöker studien hur pastischscenarier kan användas till att utvärdera en design som användare. Studien fann att användningen av spel för att utforska intima ämnen som samtycke kan vara ett bra sätt att börja konversationer bland ungdomar, enligt personer som arbetar med unga. ’Nosy Neighbours’ skapade ett neutralt sätt att behandla ämnet samtycke. Studien visade att storytelling aspekten engagerade användarna i materialet genom att skapa en verkligheteskänsla. Vid användning av pastischscenarier för att utvärdera en design kommer deltagare som är bekanta med det verk som pastischen är baserad på att använda hela dess kontext vid utvärdering, medan deltagare som inte känner tills verket är begränsade till enbart pastischscenariot. Hursomhelst, leder båda fallen till värdefull data vid utvärdering av designen. Slutligen, är användningen av pastischscenarier baserade på bekanta verk ett lysande verktyg för designers att inkorporera användarperspektiv genom hela processen.

Author: Frida Nordborg Title: It’s not hard to have sex, but it’s hard to have good sex, consent is essential’’ An interview study about women’s experiences of sex and sexual consent in practice. Sexual consent requires that you know what you want, that you want it on your own terms, and that you must be able to communicate it clearly. Previous studies show that more women than men agree to sex without consent. As a result of #Metoo movement in 2017, and the updated consent law in Sweden in 2018, more women in Sweden have started to talk about their experiences of sex and sexual consent. The aim of the study has been to gain an insight into how adult women in Swedish society relate to the expectations placed on them in their sexual relationships and about their view on sexual consent based on their ascribed sexual scripts as well as how their sexual consent manifests itself in practice. The collected material has then been analyzed based on gender theory and sexual script theory. The results show that women's views on sex and sexual consent do neither always match with each other nor how they practice it, nor how they express their will in the heat of the moment. It is understandable that the women can feel limited by what they "should" do at the moment, instead of being able to show what they really want, in fear of disappointing their male partners.

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The expectation of privacy and confidentiality in health care presents a unique dilemma for public health interests. A great deal of observational health research such as epidemiological studies, disease surveillance, and quality assurance depends on access and use of personal information in the absence of individual consent. Understandably, this raises concerns about personal privacy since sensitive disclosures of information can result in harm such as stigma, discrimination, and loss of socio-economic goods. However, the issue has been largely framed and discussed as a dichotomy: the privacy interest of the individual versus the social interest in research. to individualist paradigm informed by a traditional liberal conception of privacy that emphasizes autonomy drives this dichotomy and inevitably leads to an intractable conflict. In this thesis, I attempt to re-frame the issue by moving away from individualism in shifting the focus towards confidentiality which is relational and founded on trust. I argue that confidentiality is broader than the concern for individual privacy and is thus capable of capturing other relevant interests, such as collective and social interests. I advance a broad conception of confidentiality grounded in a mixed deontic-consequentialist moral framework that can account for respect for persons and social interests. / Thesis / Doctor of Philosophy (PhD)

This thesis is divided in three chapters: (i) introduction to organ donation, (ii) rationale, implementation and design of a pilot observational study currently underway and (iii) justification for use of a waived consent model for observational research studies on organ donor care. Organ donation is a complex event that remains a mystery to most health care providers. The first chapter reports knowledge gaps in clinical management of deceased organ donors across Canada and summarizes ongoing trials in organ donor care. The persistent deficit in transplantable organs along with the limited scientific evidence to guide the clinical management of the organ donor justify the need for a national research program in organ donor care. There are logistical and methodological challenges unique to the design and conduct of research on deceased donors. To identify potential stakeholders involved in the process of organ donation and to provide an accurate description of usual management of deceased donor and assess its variability, we developed and initiated a prospective observational study called DONATE. The second chapter of this thesis described the pilot phase of this study. It contains the following sections: i) objectives of the study ii) the screening process, iii) data collection, iv) clinical outcomes, v) methods of measurement, vi) analysis plan and vii) strategies used to minimize the biases inherent to observational studies. The normative goal of obtaining informed consent from participants may not be appropriate for an observational study in organ donor care. The third chapter summarizes the justification for use of a waived consent model for observational studies of organ donation medicine. In this chapter, I discuss regulatory, ethical and logistical issues relevant to use of a waived consent model in organ donation research. / Thesis / Master of Science (MSc) / Organ donation saves lives and it is the most effective therapy available to treat end stage organ failure of a number of organs. Unfortunately, there is a growing gap between the number of donors and the number of patients waiting for transplantation. This thesis summarizes the foundational work of a national research program in deceased donor management. It describes the study design of a 4 centre prospective observational study in deceased donor management with outcome assessment on corresponding organ-recipients. This thesis also contains a justification for waiving the procurement of consent to research on organ donor management. Finally, it will inform investigators of future national multicentre observational studies on design and implementation issues related to donor management, in order to improve care provided to donors and outcomes of recipients while reducing the gap between transplant needs and organ supply.

The current study examines judicial discourse about BDSM activities within decisions rendered in Canada during the past 20 years. A recent uprise in popular culture representation has resulted in a greater uptake of Bondage / Discipline / Dominance / Submission / Sadism / Masochism (BDSM) in the sexual lives of Canadians. Little research to date has been completed to analyze the implications that the uprise may have on the legal system when BDSM cases are presented. In particular, the legal system is being tasked with interpreting many different consent standards through the narrow affirmative-based definition found under Section 273.1 (1). The current study employed a qualitative analysis of all Canadian criminal court cases and appeals available in legal software that dealt with the issues of consent and BDSM (n=23) over a 20-year time frame. The study found that judges must interpret 4 different types of consent found within sexual relationships: affirmative consent, advanced consent to unconscious acts, consent to bodily harm and mistaken consent. Finally, the current study found that the way judges interpreted BDSM consent standards reflects a wider shift in governance from legal moralist thinking to a neoliberal paternalist governance.

The current study examined the impact of education about rape myths and sexual consent law on the guilt and responsibility assessment of mock jurors in a hypothetical rape trial. Juror education had no effect on any of the measures and did not vary with alcohol consumption. In regards to alcohol, mock jurors always assigned more guilt to the defendant if the complainant was sober, regardless of his alcohol consumption. Mock jurors consistently found the defendant guilty when both were sober. Complainants were assessed more responsibility when both the complainant and defendant were sober and when they were both intoxicated. More responsibility was attributed to the complainant when she was intoxicated and the defendant was sober. The complainant was assessed the least responsibility when she was sober and the defendant was intoxicated. Findings suggest that educating mock jurors about rape myths does not have an effect on ratings of defendant guilt.