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The purpose of this study was to investigate student preferences for content, timing, and method of informed consent within counselor education programs. Participants included 115 students enrolled in counseling internship courses at six counseling programs accredited by the Council for Accreditation of Counseling and Related Educational Programs (CACREP). Participants completed the Informed Consent Preferences Questionnaire (ICPQ), an instrument designed specifically for this study through systematic instrumentation development. Descriptive statistics highlighted participants' moderate to high ratings of perceived importance for an array of suggested content pieces for student informed consent. Participants varied among themselves and between items in relation to preferred timing of informed consent, and they consistently reported a desire for student informed consent to be facilitated through a combination of both oral and written methods. Results of exploratory factor analysis revealed a simple eight-factor structure within the ICPQ and suggested strong internal reliability. Correlations for participant scale scores for the eight factors revealed a variety of small to medium correlations. Results from t-test and one-way analysis of variances (ANOVA) indicated that participant preferences did not vary according to demographic variables. Finally, participants' qualitative responses revealed high levels of support for student informed consent. Findings of this study may aid counselor educators in evaluating current program informed consent practices. As a result of evaluation, counselor educators can affirm existing, and/or design new informed consent practices that accurately reflect the needs and desires of counseling students. Future researchers may also utilize the results to guide additional studies related to the practice of student informed consent.

The purpose of this study was to examine the beliefs and behaviors of Emerging Adults relating to sexual consent, and how these ideas relate to an individual’s well-being. Specifically, this study used a survey that combined multiple questionnaires that were developed by the research team as well as an existing measure of consent: Sexual Consent Scale- Revised (Humphreys, T., & Brousseau, M. 2010). These questionnaires were used to answer the two questions that are the focus of this presentation and are of importance to schools, parents and family life educators: “How does an individual’s sexual behavior, beliefs or attitudes relate to individual wellbeing?” and “How does an individual’s sexual behavior relate to sexual consent?" This study was a preliminary look into sexual consent in emerging adulthood with a focus on wellbeing. The study included a total of 74 females (77.1%) and 21 males (21.9%); One (1%) participant identified as Other. The range of ages was 18-28, with a mean age of 20.14 years (SD 2.091). A total of 37 different majors were included (Undergraduate and Graduate). Most students indicated they were single (n=51, 56.6%) and 39 individuals indicated they were in a relationship (n=39, 43.3%). The two most important findings for this presentation are: There is an “Idealized” idea of sexual consent, disconnected from behavior, highlighted by the cognitive dissonance shown in responses to two items— 93% of individuals strongly agreed to the item: “I feel that sexual consent should always be obtained before the start of any sexual activity,” yet only 11% strongly agreed to the statement “I always verbally ask for consent before I initiate a sexual encounter” and the second important finding relates to the hypothesis— “As lack of perceived behavioral control increases, scores of assuming consent will also increase”. The data showed there is a significant, strong, positive relationship between behavioral control and assuming consent (r=.570, p=.000), indicating an important connection. This research is especially important in the current political/cultural climate—promoting sexual knowledge is becoming increasingly imperative for the overall wellbeing of individuals. The baseball model of getting to “bases” and “scoring” dominates US culture and may lead to ideas of competition versus ideas of mutual pleasure and enthusiastic consent. Educating families as well as youth is an important step to changing culture. Social Learning Theory provides a unique perspective in that both behavioral skills/practice and cognition need to be addressed in sex education in order to reinforce positive sexual consent behaviors. There is evidence that the time period from adolescence into emerging adulthood shows an increase in sexual risk taking, and the theory of Emerging Adulthood marks this time period as one of transitions and exploration (Arnett 2000, 2007). Educating youth before this time period may be key to promoting healthy behaviors. This study is an initial investigation into a complex topic that can be used to facilitate a discussion on sexual consent as well as the current implications for families and parents that need to educate their children about these topics.

Title from title page of PDF (University of Missouri--St. Louis, viewed March 9, 2010). Includes bibliographical references (p. 52-61).

Thesis (M.S.)--University of Michigan, 2004. / Includes bibliographical references.

abstract: ABSTRACT Whole genome sequencing (WGS) and whole exome sequencing (WES) are two comprehensive genomic tests which use next-generation sequencing technology to sequence most of the 3.2 billion base pairs in a human genome (WGS) or many of the estimated 22,000 protein-coding genes in the genome (WES). The promises offered from WGS/WES are: to identify suspected yet unidentified genetic diseases, to characterize the genomic mutations in a tumor to identify targeted therapeutic agents and, to predict future diseases with the hope of promoting disease prevention strategies and/or offering early treatment. Promises notwithstanding, sequencing a human genome presents several interrelated challenges: how to adequately analyze, interpret, store, reanalyze and apply an unprecedented amount of genomic data (with uncertain clinical utility) to patient care? In addition, genomic data has the potential to become integral for improving the medical care of an individual and their family, years after a genome is sequenced. Current informed consent protocols do not adequately address the unique challenges and complexities inherent to the process of WGS/WES. This dissertation constructs a novel informed consent process for individuals considering WGS/WES, capable of fulfilling both legal and ethical requirements of medical consent while addressing the intricacies of WGS/WES, ultimately resulting in a more effective consenting experience. To better understand components of an effective consenting experience, the first part of this dissertation traces the historical origin of the informed consent process to identify the motivations, rationales and institutional commitments that sustain our current consenting protocols for genetic testing. After understanding the underlying commitments that shape our current informed consent protocols, I discuss the effectiveness of the informed consent process from an ethical and legal standpoint. I illustrate how WGS/WES introduces new complexities to the informed consent process and assess whether informed consent protocols proposed for WGS/WES address these complexities. The last section of this dissertation describes a novel informed consent process for WGS/WES, constructed from the original ethical intent of informed consent, analysis of existing informed consent protocols, and my own observations as a genetic counselor for what constitutes an effective consenting experience. / Dissertation/Thesis / Ph.D. Biology 2013

ABSTRACT Patient's Informed Consent, Medicine Doctors' Responsibility, Patient's Protection This diploma thesis analysis the informed consent of patient, which is manifestation of the patient's right to decide about his own health freely. The main aim is to describe what laws is the informed consent based on, what it should contain, in which situations the doctor is allowed to act without the consent and what the consequences of acting without consent, in cases, in which the informed consent is required by law, are. Further problems, which are not adequately treated by the law, are also mentioned, and the obtaining of the informed consent in children and the informed consent in practice were described. It was found out, that registration of complaints should be kept by each medical facility separately in the Czech Republic. Except that, the complaints department is established at each regional office. Czech laws do not impose to register complaints or claims in national unified register. Number of complaints between 2008-2010 were obtained from the Czech Medical Chamber, Control Department of the Ministry of Health, Medical Department of Regional Office and from Prague City Hall. It can be stated, based on the study of all related resources and after comparing of the recquired information with the reality, that even if all regulations are abided, it is impossible for the doctor to inform patient about all risks and possible complications to avoid the complaints completely. The questionnaire survey shows, that the legal awareness of doctors in the issue of informed consent is inadequate and it is important to improve it.

Sexual ethics is about the norms we should have when it comes to sex. It concerns how we should behave towards each other in terms of sexual acts. Within the field of sexual ethics, consent has acquired a central role in determining what is permissible and impermissible in sexual actions. This primarily focuses on whether consent can prevent sexual violation. Another focus is on whether individuals have a satisfying sexual life, a value that can be described as sexual flourishing. What has been missing in previous research is the emphasis on the relationship between consent and sexual flourishing. This is precisely the focus that this essay aims to explore - the connection between consent and sexual flourishing. In this essay, I will present arguments showing that consent and sexual flourishing do not harmonize well, and that consent can negatively impact sexual flourishing. The arguments are that consent creates an asymmetry between the sexual parties, based on two factors: that consent requires a strict structure that is lacking and that a person can relinquish their rights during the sexual act. I will then present two modifications of consent and examine whether they can avoid criticism and contribute to positive sexual flourishing. The conclusion is that due to consent requiring a specific structure tailored to agreements about objects, it is not suited for intimate situations involving bodily rights without further adjustments. / Sexuell etik handlar om vilka normer vi ska ha när det gäller sexuella relationer och sexakter och därmed hur vi ska agera mot varandra när det kommer till sexuella handlingar. Inom området för sexuell etik har samtycke fått en central roll för att avgöra tillåtna och otillåtna sexakter, inslag och handlingar. Diskussionen runt samtycke fokuserar ofta på om samtycke kan förhindra sexuella överträdelser. Ett annat fokus inom sexuell etik är om individerna har ett tillfredställande sexuellt liv. Ett värde som ska fånga detta är sexuellt blomstrande. Det som har saknats i tidigare forskning är fokuseringen på relationen mellan samtycke och personers sexuella blomstrande. Syftet med denna uppsats är att utforska vilka konsekvenser samtycke kan ha för sexuellt blomstrande. I denna uppsats kommer jag att argumentera för att samtycke kan påverka sexuellt blomstrande negativt. Argumenten är att samtycke skapar en asymmetri mellan de inblandade parterna baserat på två faktorer: att samtycke kräver en specificerad struktur som saknas under sexakter och att personer ger upp rättigheten till sexuellt självbestämmande under sexakten efter ett samtycke. Konsekvensen är att på grund av att samtycke utgår från en specifik struktur som inte är anpassad till överenskommelser om kroppar och intima situationer så måste modifikationer av samtycke utredas. Min slutsats är utan ytterligare modifikationer och förbättringar är samtycke inte lämplig för intima situationer.

Yes / To date, open science, and particularly open data, in Psychology, has focused on quantitative research. This paper aims to explore ethical and practical issues encountered by UK-based psychologists utilising open qualitative datasets. Semi-structured telephone interviews with eight qualitative psychologists were explored using a framework analysis. From the findings, we offer a context-consent meta-framework as a resource to help in the design of studies sharing their data and/or studies using open data. We recommend ‘secondary’ studies conduct archaeologies of context and consent to examine if the data available is suitable for their research questions. This research is the first we know of in the study of ‘doing’ (or not doing) open science, which could be repeated to develop a longitudinal picture or complemented with additional approaches, such as observational studies of how context and consent are negotiated in pre-registered studies and open data. / The author's manuscript has a slightly different title from the published article: A meta-framework for designing open data studies in psychology: ethical and practical issues of open qualitative data sets

Le test prénatal non invasif (TPNI) est une technique de dépistage prénatal qui ne présente pas de risque accru de fausse couche, peut être effectué plus tôt dans la grossesse et est plus précis que les technologies existantes. Cependant, ces avantages peuvent contribuer à l’érosion de l’autonomie reproductive. Entre 2013 et 2017, une étude intitulée PEGASE a été menée, validant les performances et l'utilité du TPNI, ainsi qu’analysant les implications économiques, éthiques, juridiques et sociales de la technologie. Le présent mémoire est basé sur les données d’une enquête auprès des professionnels de santé (N = 184). Ce mémoire aborde la relation entre les attitudes des professionnels de santé concernant a) le "consentement éclairé" et b) le "consentement écrit" dans le contexte du TPNI. Il remet en question le récit établi dans la littérature, que les professionnels qui croient que le consentement écrit pour le TPNI n'est pas important croient également que les procédures de consentement pour le TPNI «devraient devenir moins rigoureuses» (1). Les données montrent que ce sont les professionnels qui se soucient de l'autonomie qui doutent de l'importance du consentement écrit. Cela contredit le récit cité ci-dessus. Les opinions des professionnels sur le «consentement écrit» ne peuvent donc pas être utilisées pour inférer leurs opinions sur l’importance du «consentement éclairé». Il est recommandé d’enquêter les professionnels de la santé sur des considérations particulières liées à la pratique, telles que celles enquêtées dans cette étude, plutôt que d’interroger les répondants sur des concepts académiques tels le «consentement» ou l’«autonomie». / Non-Invasive Prenatal Testing (NIPT) is a new generation of prenatal screening that poses no increased risk of miscarriage, can be performed earlier in the pregnancy, and is more accurate than previously existing technologies. These advantages, however, potentially contribute to eroding reproductive autonomy, already under threat from other screening methods. Between 2013 and 2017, a study titled PEGASUS was conducted, validating the performance and utility of NIPT, as well as studying the economic, ethical, legal and social implications of the technology. One of these activities was a series of surveys conducted throughout Canada in 2015-16. The present thesis is based on the data from the healthcare professionals’ survey (N=184). This thesis addresses the relationship between healthcare professionals’ beliefs regarding a) “informed consent” and b) “written consent” in the context of NIPT. It questions the established narrative in the bioethics literature, that professionals who believe written consent for NIPT is not important also believe consent procedures for NIPT “should become less rigorous” than those used for invasive prenatal testing (1). Data from the survey shows that it is precisely those professionals who care about reproductive autonomy considerations who doubt the importance of written consent for NIPT. This directly contradicts the narrative cited above. Professionals’ stated views on “written consent” thus cannot be used to infer their unstated views on the importance of “informed consent”. It is recommended to investigate particular practice-based considerations such as the ones in this study rather than querying survey respondents on scholarly concepts such as “consent” or “autonomy”.