Women afflicted with cervical cancer who have the highest morbidity and mortality rates have been the least likely to be screened. The overall aim of this research project was to investigate non-attendance in a cervical cancer screening (CCS) program among women with no registered cervical smear during the previous five years. Both quantitative (I,III) and qualitative methods (II) as well as costeffectiveness analysis (IV) were used in this research project. In Kalmar County women (aged 23-65 years) are invited to CCS every third year. All cervical smears taken both in opportunistic and organised CCS are coordinated in a register called Sympathy. The coverage is 88.4 %. From Sympathy, a random sample of 400 women served as a study group and another 400 women as a control group (III,IV). From the study group, 133 women participated in study I and 14 women in study II. Data was collected by telephone interviews based on a questionnaire (I), qualitative face-to-face interviews (II), questionnaire, promotive efforts and outcome (III), costs and effectiveness (IV). Quantitative data was analysed by descriptive and analytic statistics (I,III), qualitative data was analysed by content analysis. In study IV, cost-effectiveness analysis was used. The women believed that CCS was a good idea for all other women, but tended to refer to various circumstances resulting in their own non-attendance. One of the most common reasons for non-attendance was the feeling of being healthy. The women prioritized family and work commitments, and the invitation to attend CCS was sometimes experienced as a stressful disturbance. The feeling of discomfort was related to the gynaecologic examination, or to health care visits in general (I,II). Of 133 women, 120 could consider having a cervical smear taken and their two most common requirements for doing so were to be assured they would be treated in a friendly way (19%) and to find a suitable time (18%) for having the cervical smear. Fifty women wanted to be helped to have a cervical smear taken. Promotive efforts ranged from making a simple telephone call to arranging an appointment time to a combination of promotive efforts including repeated encounters in order to create a trusting relationship with respect to taking the smear. In the study group, 29.5% (n=118) had a registered cervical smear at follow-up compared to 18.5% (n=74) in the control group, (p<0.001) (III). In the study group, the cost per cervical smear taken was 66.87 €, and in the control group it was 16.62 €. The incremental cost per additional cervical smear taken was 151.36 € (IV). In conclusion, women’s reasons for not attending CCS are complex and are influenced by both present and earlier circumstances. In settings with high coverage, further contact in order to promote women’s attendance at CCS seems to be associated with high costs in relation to the number of additional cervical smears taken. / On the day of the defence data the status of article I was: In press; article II: Submitted; article II: Accepted and artile IV: In press.

Background: 1985 saw the beginnings of a population-based biobank in Västerbotten County, Sweden. In 1999, a start-up genomics company, UmanGenomics, obtained ‘all commercial rights’ to the biobank. The company introduced an ethics policy, which was well received in prestigious journals, focusing on public oversight and informed consent. Aims: To explore how social anthropology can aid understanding of the challenges posed by the new role of the biobank in Västerbotten, and thus complement more established traditions in the field of medical ethics. An anthropological study of the ethics policy was executed. Theoretical perspective: Inspired by the anthropology of policy and social science perspectives on ethics and morality, the policy was studied at three analytical levels: policymakers (who formulate the policy), policy workers (who implement the policy, primarily nurses who obtain informed consent) and target group (for whom and on whom the policy is supposed to work: the potential donors to the biobank). Methods: Policymakers, nurses, and potential donors were interviewed, donations observed, and official documents analysed to mirror the moral problematizations made at the three levels in each other and to study the practical implications of the policy. To extend the reliability of the findings two surveys were executed: one among the general population, one among donors. Results: The qualitative studies show that policymakers distinguish between blood and data differently to potential donors. Informed consent seems more important to policymakers than potential donors, who are more concerned about political implications at a societal level. Among the respondents from the survey in the general public, a majority (66.8%) accepted surrogate decisions by Research Ethics Committees; a minority (4 %) stated informed consent as a principal concern; and genetic research based on biobank material was generally accepted (71%). Among the respondents to the survey in donors, 65% knew they had consented to donate a blood sample, and 32% knew they could withdraw their consent; 6% were dissatisfied with the information they had received; and 85% accepted surrogate decisions by Research Ethics Committees. Discussion: The ethics policy constitutes a particular naming and framing of moral problems in biobank-based research which overemphasises the need for informed consent, and underemphasises other concerns of potential donors. This embodies a political transformation where access to stored blood and medical information is negotiated in ethical terms, while it also has unacknowledged political implications. In particular, the relations between authorities and citizens in the Swedish welfare state are apparently transforming: from mutual obligation to individual contracts. Conclusion: Anthropology contributes to medical ethics with increased awareness of the practical implications of particular research ethical initiatives. This awareness promotes appreciation of the political implications of ethics policies and raises new issues for further consideration.

The present thesis is based on a scientifically-informed, contextualized and historicized reading of Ludwik Fleck. In addition to his monograph, the material studied includes his additional philosophical writings, his internationally-published scientific articles and two, thus-far-unstudied postwar Polish papers related to his Buchenwald experiences. The sources provided by Fleck have been traced back to the time of their origin. Based on the above material, it is argued that, rather than relativizing science and deeply influencing Kuhn, Fleck, attempting to participate in the current debates, is an ardent proponent of science, offering an internal account of its pursuit that accords with his oft-contested epistemic concepts, e.g., Denkzwang, Sinnsehen and Kopplungen. The exposure of his description of the Wassermann reaction discloses a highly selective reading of the sources available at the time, but also reveals its relation to the current debate on Einzelwissenschaften, or the standing of new emerging disciplines versus age-old ones, all occasioned by the remarkable progress of science that has also affected philosophy. The divide between philosophers and scientists on the philosophical implications of modern physics is exposed, as is Fleck’s heuristic use of the latter topic in his epistemology. A more realistic account of his often-valued scientific accomplishments is provided. It is argued that the modern interpretation or received humanist view of Fleck is based on the opposition, at the time Fleck’s monograph was rediscovered, of STS writers to a scientifically-informed reading of his texts. An additional corrective to the received view of Fleck is found in some of his postwar Polish papers related his Buchenwald experiences. The latter might also provide an answer to some of the contradictions inherent in the modern mythology surrounding Fleck. In amply exposing the precarious situation of the time, and the complexity of the ethical issues at stake, Fleck’s papers in fact generate age-old philosophical questions still worth contemplating. / QC 20100826

The general framework of this thesis is that of ethical Technology Assessment (eTA). Whereas the first essay proposes an inclusive approach to technology assessment by delineating an ethical checklist, the following essays focus on two of the checklist points, i.e. “privacy” and “control, influence and power”, in relation to workspace surveillance. The core idea of Essay I (written in collaboration with Sven Ove Hansson) is that, due to its strong social impact, new technology and novel use of existing technology should be considered from the perspective of ethics. We suggest that assessments should be conducted on the basis of nine crucial ethical aspects of technology. In Essay II an in-depth analysis of the meaning and value of privacy in the realm of work is undertaken. The meaning and value of privacy is explained as well as why it should be protected. It is argued that two dimensions of privacy should be safeguarded; “informational privacy” and “local privacy” for the reason that workers’ personal autonomy is protected thereby. Essay III is concerned with how workspace surveillance requires that job-applicants claim their privacy interests in employment negotiations to a much larger extent than what was previously the case. In most cases however, a dependency asymmetry between employer and job-candidate makes the latter ill-equipped for doing so. This asymmetry serves as the point of departure for an analysis of the conditions under which consent should be considered a criterion on moral acceptability with regard to employment contracting. The analysis suggests ways of rectifying this imbalance, raising demands on the quality of contractual consent. Essay IV discusses the extent to which it should be morally permissible for current or prospective employees to trade off their privacy in employment negotiations. The analysis starts out from, and questions, a libertarian case for voluntary self-enslavement. It is concluded that not even an orthodox libertarian can justify trade offs of a social good like liberty. Neither should employees be allowed to abstain informational privacy for the reason that such a trade-off could harm their future selves. In Essay V a dimensional analysis is proposed as a means to identify actually or potentially privacy invasive surveillance practices. It discusses ways in which different types of surveillance intrude upon employees’ privacy in order to guide the evaluation of such practice. Even though negative implications cannot be avoided altogether, by means of the proposed analysis, minimally intrusive means of monitoring can be identified. / QC 20100902

Unique characteristics of cluster randomized trials (CRTs) complicate the interpretation of standard research ethics guidelines. Variable interpretation by research ethics committees may further complicate review and conduct. An international web-based survey was administered to corresponding authors of 300 randomly sampled CRT publications. We investigated ethics review and consent practices, investigator experiences with ethics review, and the perceived need for CRT-specific ethics guidelines. The response rate was 64%. Ethics review and consent were under-reported in publications. Ethics approval was obtained in 91%, and consent from individual and cluster level participants in 79% and 82% of trials. Consent varied by level of experimental intervention, data collection, and cluster size. Respondents cited variability among ethics committees (46%), and negative impacts of ethics review on their studies (38%). The majority perceived a need for ethics guidelines (73%), and guidance for ethics committees (70%). CRT-specific ethics guidelines are required to ensure practices meet ethical standards.

The high prevalence of sexual violence warrants continued research into its prevention. Understanding consensual sexual experiences holds promise for sexual violence prevention; however, sexual consent is a surprisingly understudied phenomenon. Existing research focuses on the tactics used to coerce consent and the ways in which college students initiate and indicate consent. Research that begins to articulate a theory of consent may help engineer situations antithetical to sexually violent experiences. This study is a first step toward that objective. This paper presents findings from an exploratory research study on college students’ conceptualizations of sexual consent. The purpose of this study was twofold: To investigate how college students define consent and to understand how context influences the consent process. To explore these research questions, quantitative and qualitative data were collected using Q methodology. Exploratory factor analysis revealed two groups of college students who conceptualize consent differently. One group focuses on the importance of consent to rape prevention, the other to healthy sexuality promotion. Qualitative interview data suggest contextual variables such as definition of consent and relationship type influence consent to a lesser extent than alcohol use, personal sexual experience, discrepant levels of sexual experience between partners, and feelings for a potential sexual partner. Results support replacing the current model of consent, in which consent is a contractual obligation between sexual partners, with one of sexual communication, where consent is woven into a broader conversation about healthy sexuality. The strengths and limitations of doing so are discussed and directions for future intervention research are presented.

This thesis attempts to stress the decisiveness of armed force for the capitalist hold of state power and that only if a multi-level analytical framework is adopted a fuller account of the reality can be given with reference to the capitalist hold of state power. After laying the methodological and theoretical grounds for a multi-level analysis along with the privilege of armed force as the factor enabling the state power, it concretizes the multi-level analytical framework in the context of Turkey. It drives the attention to the co-existence of micro and macro level factors influential over state practices. The mafia forces are also proposed to be integrated to the analysis of the capitalist state on account of the considerable economic and armed means they hold. The Weberian approach describing the state in terms of its monopoly of legitimate use of force is proposed to be replaced by an alternative one not holding the consent of the inhabitants as an unconditional necessity for the presence of the state. The class struggle process is held to take place at a site embracing the interplay of associative and communal relationships in a micro-macro range. The routes of tendential multiplicity and totality are attempted to be explored at least partially. Also the importance of strategy and tactics are stressed and some threats waiting the forces longing for a world without exploitation and domination are underlined.

Health information of patients are preserved either in Electronic Health Records (EHR) repositories which are generally managed in national level or in local hospital systems. However, the real owners of the data are always the patients themselves, without depending where or by whom the data is preserved. Patients should have the rights to permit or deny the access of modification of their information to whoever they want. Here comes the concept of Consent. Consent means provision of approval or agreement, after thoughtful consideration. Decisions of patients about sharing their information are collected and preserved in consent documents. These consent documents can be stored in different formats. The eXtensible Access Control Markup Language (XACML) defines the policy language for this purpose. Also there is another language defined by XACML called Request/Response Language for creating request to access information and response to reply requests. Even though XACML is the most appropriate standard for conserving consent documents, it has some weak points when used in practical systems. In the first part of this study, a new model based on XACML is designed. This model is easily convertable to XACML and vice versa. Then a Consent Management tool is designed using the new model. This tool has two parts, Basic Consent Editor and Consent Manager. Basic Consent Editor is aiming to provide a practical user interface for creating and managing consent documents. Consent Manager on the other hand plays a decision mechanism role which handle requests and create decision responses according to already created consent documents. In this study, three different tools are implemented based on the Consent Management tool, each for different purposes on different projects. Throughout these implementations, usability and possible extensibility of Consent Management tool is analysed.

Title from PDF of title page. / Document formatted into pages; contains 165 pages. / Thesis (M.A.)--University of South Florida, 2002. / Includes bibliographical references. / Text (Electronic thesis) in PDF format. / ABSTRACT: The doctrine of informed consent, defined as respect for autonomy, is the tool used to govern the relationship between physicians and patients. Its framework relies on rights and duties that mark these relationships. The main purpose of informed consent is to promote human rights and dignity. Some researchers claim that informed consent has successfully replaced patients&softsign; historical predispositions to accept physicians' advice without much explicit resistance. / Although the doctrine of informed consent promotes ideals worth pursuing, a successful implementation of these ideals in practice has yet to occur. What has happened in practice is that attorneys, physicians, and hospital administrators often use consent forms mainly to protect physicians and medical facilities from liability. Consequently, ethicists, legal theorists, and physicians need to do much more to explain how human rights and human dignity relate to the practice of medicine and how the professionals can promote them in practice. / This is especially important because patients' vulnerability has increased just as the complexity and power of medical science and technology have increased. Certain health care practices can shed light on the difficulties of implementing the doctrine of informed consent and explain why it is insufficient to protect patients' rights and dignity. Defining a normal biological event as a disease, and routinely prescribing hormone drug therapy to menopausal women for all health conditions related to menopause, does not meet the standards of free informed consent. / Clinicians provide insufficient disclosure about risks related to long-term use of hormone therapies and about the absence of solid evidence to support their bias toward hormone therapies as a treatment of choice for menopause related health conditions. The contributing problem is women's failure to act as autonomous agents because they either choose not to take an active part in their own therapy or because they fear to question physicians' medical authority. To insure that patients' autonomy and free choice are a part of every physician-patient interaction, physicians and patients need actively to promote them as values that are absolutely indispensable in physicians' offices, clinics, and hospitals. / System requirements: World Wide Web browser and PDF reader. / Mode of access: World Wide Web.

Thesis (L.L.M.)--York University, 2000. / "Graduate Programme in Law, Osgoode Hall Law School, York University." Includes bibliographical references. Also available on the Internet. MODE OF ACCESS via web browser by entering the following URL: http://wwwlib.umi.com/cr/yorku/fullcit?pMQ59546.