Master Thesis Abstract Institute of Political Studies Faculty of Social Sciences Charles University in Prague Author: Pavithra Ramesh Supervisor: Janusz Salamon, Ph.D. E-mail: Pavithra.ramesh14@gmail.co m E-mail: janusz.salamon@univ- oxford.com Phone: +420774960096 Phone: +420731816202 Specialisation: IEPS Defense Planned: June 2017 Topic: Bioethics is the study concerned with the implications of medical procedures, technologies and treatments from the perspective of ethics, philosophy, law and its implementation. It encompasses a wide range of ethical concerns in relation to organ transplants, genetic engineering, artificial reproduction, euthanasia etc. My thesis is an attempt to probe into certain ethical nuances amidst the technological advances in the field of medicine. Particularly, with respect to organ trade in India. Since the origin of medicine the primal goals have followed the Hippocratic Oath of "Cure sometimes, treat often, comfort always." (Adams 1891). The questions this perception of early medicine leaves us with are: Have we withdrawn from the compassion and ethics prescribed with the advent of advanced lab technology? What are the issues around organ trade in India? What causes these issues? And how can this be dealt with? The approach to pursue the answers for the above, revolves around...

Like the rest of the western world, the UK faces a significant increase in the prevalence of diseases associated with lifestyle. Smoking rates have reduced, but increasing obesity has contributed to alarming increases in diabetes. Discovery of the correlation between behaviour and poor health has, since the 1970s, resulted in public health policies emphasising behaviour change, and personal responsibility; an emphasis that survived later research which demonstrated social, genetic and psychological determinants on behaviour and health. The latest version of the NHS constitution exhorts us to ‘recognise that you can make a significant contribution to your own, and your family’s, good health and wellbeing, and take personal responsibility for it.’ This thesis seeks to clarify the meaning and extent of personal responsibility for health, and at its core are four papers published in peer-reviewed journals. The first clarifies the concept concluding that it is best understood in a tripartite conception of a moral agent having obligations and being held responsible if he fails to meet them. The following two papers discuss the nature of the obligations, using utilitarian reasoning and arguments from analogy. First, an exploration of the moral obligations for our own health is undertaken via an analysis of the practice of tombstoning, jumping from height into water. I conclude that the obligations are of process rather than outcome, consisting of an epistemic duty to determine the health related consequences of our acts, and a reflective duty to consider these consequences for us and for those who share our lives. Second, following an examination of the moral status of blood donation, I conclude that despite its presentation as a praiseworthy and supererogatory act, it is more properly regarded as a prima facie obligation, supported by arguments from beneficence and justice. The final paper discusses the final part of the tripartite conception of personal responsibility for health: being held responsible. I discuss the nature of blame and extend the tombstoning analogy as a way of testing my own intuitions in response to an imagined adult son who has undertaken this dangerous activity. I argue that the notion of blame is not generally allowed as part of the patient – professional relationship, and yet without considering blame, the concept of personal responsibility for health is incomplete. I conclude that if the epistemic and reflective duties, individually applied, conclude that an obligation is owed, it is owed to those within personal relationships, and holding people responsible for their health-effecting behaviour is also best undertaken within these relationships. I conclude the thesis by considering the implications for professional practice. Inevitably this leads to consideration of the promotion of personal autonomy in health care. A more relational account of autonomy is suggested. Facilitating the epistemic duty so that individuals are better able to understand the risks of their behaviour requires rethinking of the way that health promoting material and information are presented.

Bakgrund Den bästa behandlingen vid terminal njursvikt är njurtransplantation från levande donator. Det har klara fördelar jämfört med donation från avliden givare. Flertalet donatorer har god psykosocial hälsa efter donationen. Det finns dock händelser i vissa donatorers liv samt bristande psykosocial uppföljning från vårdens sida som gör att en andel donatorer mår dåligt. Syfte: Denna litteraturstudie har till syfte att identifiera hur njurdonatorer upplever den psykosociala uppföljande omvårdnaden och vilka behov av utveckling de ger uttryck för. Metod: En kvalitativ ansats med en allmän litteraturstudie och deskriptiv design.  Resultat: Merparten av donatorer upplever en god vård efter utskrivningen från sjukhuset efter nefrektomin. Det finns dock de njurdonatorer som upplever psykosocial stress och oro i samband med negativa händelser efter donationen. Exempel på sådana händelser är försämrade sociala relationer med mottagaren, försämrad hälsa hos njurmottagaren eller mottagarens död. Den psykosociala omvårdnaden av njurdonatorer efter nefrektomin kan och bör förbättras.   Slutsats: Denna litteraturstudie visar att en övervägande andel av njurdonatorerna är nöjda med den psykosociala omvårdnaden efter utskrivningen från sjukhus. Det finns dock en grupp donatorer som både ger uttryck för förbättring och utveckling. De visar på brister i mötet mellan hälso- och sjukvården och individen, kontinuitet och innehåll på uppföljning och psykosocialt omhändertagande vid kris. / IntroductionThe superior treatment for kidney failure is live kidney transplant. It has obvious benefits compared to kidney tranplants from deceased persons. The majority of kidney donors experience a high psychosocial health after being subject to a kidney donor nephrectomy. However, there are a small fraction of donors that feel bad after donation due to negative events in their lives and lack of psychosocial follow-up from the health care system.  Aim The aim of this literature review is to identify how live kidney donors experience the psychosocial care after the postoperative period and to elucidate what areas of improvement the donors identify.  Method A qualitative approach and descriptive design with a literature review.  Results The majority of donors experience a good aftercare post nephrectomy. However, there are donors that feel emotional and psychosocial stress and worry in conjunction with negative events after their nephrectomy. Deteriorated social relations with the recipient, decreased health in the recipient and the death of the recipient are triggers for decreased psychosocial state. There is potential for psychosocial care improvement of the kidney donors.   ConclusionThis literature review shows that most kidney donors are satisfied with the psychosocial care after discharge from hospital. There is however a group of donors that express need for improvement and progress. They tell that there are deficiencies in the contact between donor and the healthcare staff, deficiencies in care continuity and the content of the follow-ups is not sufficient and psychosocial care in donors´crises can be improved.

South Africa has a low organ donation and transplantation rate despite the availability of medical professionals with the expertise to perform such transplants. This can be attributed to various factors, such as knowledge and attitudes towards organ donation and transplantation. Despite the efforts of the Organ Donor Foundation in South Africa by conducting awareness and education campaigns organ donation rates remains low. There is a wide discrepancy in the rate of organ donation among the different ethnic groups in the country, perhaps due to a lack of knowledge or for cultural or religious reasons. Nurses, as health-care providers, have an important role to play in enabling patients and families to deal with the topic of organ donation. This cross-sectional study investigated the knowledge and attitudes of 268 pre-registration nursing students towards organ donation, at a nursing college in Mthatha, using an anonymous, self- administered questionnaire for data collection. A stratified convenient sampling method was used. The data was captured and analysed using the SPSS statistical package, Version 21; thereafter, descriptive and cross-tabulation analyses were performed on the data. Results: The majority of respondents (62.8%) were aware of organ donation with a small number (1.6%) registered as organ donors. Ethnicity and religion did not influence an individual's decision to donate his/her organs, which suggested that the decision was a personal one. There was no association between age group and willingness to donate a kidney to a relative, although younger respondents were willing to donate kidneys as living donors. There was also no clear relationship between gender and willingness to donate an organ (p-values of 0.03). Knowledge about organ donation was seen as a strong predictor of the attitudes towards organ donation. The majority of respondents were willing to donate organs for transplantation to save the lives of others. It is highly recommended from the results of the study that awareness campaigns to promote organ donation using various strategies and emphasising altruistic motives can increase the organs for donation.

När ett organ inte längre fungerar tillfredsställande kan en organtransplantation bli aktuell vilket innebär att ett organ från en frisk individ ersätter en annan persons sviktande organ. Den friska individen donerar sitt organ för att hjälpa en sjukdomsdrabbad person och försätts därför i en speciell situation utanför sjukvårdens ordinarie inriktning eftersom sjukvård främst syftar till att förbättra personers hälsa. Detta ställer krav på sjuksköterskan att individanpassa vården vilket kräver kunskap om levande donationer. Syftet med studien var att beskriva upplevelsen av att donera ett organ ur den levande donatorns perspektiv. Detta var en litteraturstudie av kvalitativa artiklar med en manifest innehållsanalys och induktiv ansats. Analysen baserades på fjorton vetenskapliga artiklar och resulterade i sex kategorier; att donationsbeslutet motiverades av varierande faktorer, att donationsriskerna hanterades genom förbiseende och acceptans, att bristande kommunikation och organisering skapade oro, att donationen bidrog till positiva effekter på en personlig nivå, att donationen kunde medföra förändringar i privatlivet och att donatorerna trots omständigheter var nöjda med sitt beslut. Donatorers upplevelser visade att relationer kan ha en påverkan på donationsbeslutet och synen på donationsriskerna samt att donationen kan bidra till ökad livskvalitet. Donatorer hade också ett behov av information om donationens påverkan på livet och donationen bör vara kostnadsneutral för att undvika etiska dilemman och öka donationsmöjligheten. Ytterligare litteraturstudier behöver genomföras med bredare urval för att öka kunskapen om levande donationer i stort. Denna litteraturstudies resultat ökar förståelsen för levande donatorer och kan därför bidra till att förbättra vården för denna patientgrupp.

Excerpt: The recent study by Floden, Lennerling, Fridh, Rizell and Forsberg [1] concluded that using the Attitude Towards Organ Donor Advocacy Scale (ATODAS) is ready for use in future research studies because it has good psychometric properties for measuring ICU nurses’ attitudes towards advocacy on behalf of potential and actual organ donors. However, that conclusion is not supported by the data in the study because of lack of evidence of measurement validity

The state of Maryland has been unsuccessful in achieving its goal of registering all of its population as organ donors. The purpose of this correlational study was to understand if allowing registered donors to remain anonymous would increase donor registration rates. The theoretical foundation of this study was the theory of planned behavior. Data were collected from the Motor Vehicle Administration of Maryland and the Division of Motor Vehicle of Virginia. The data were analyzed using regression displacement, interrupted time series analysis, auto correlation analysis, and Arima Box Jenkins methodology. According to the study findings, offering the option to remain anonymous and registering to be an organ donor with no heart icon on the driver's license did not have the immediate effect of encouraging more people to register as an organ donor. Parameter estimates from an Arima autoregression analysis did suggest that the impact of the removal of the heart icon may have a delayed impact, although data availability limited attempts at further investigation.

While technological advances in immunology and surgery have permitted rapid increases in the number of homotransplantations now performed, little is known about layman’s attitudes toward donation of organs. Implicit in such progress has been the medical field's assumption that enough donor organs will be forthcoming to meet the increasing demand. In order to research this area a dual emphasis on practical and theoretical issues was employed. The purpose of the present study then, was to investigate this medical assumption by sampling the attitudes and behavior of college students toward donation of organs for transplant purposes, and at the same time, to clarify some of the methodological issues resident in attitude research. The following experimental hypothesis was tested: individuals who express positive or negative attitudes toward organ donation, as measured on an attitude scale, behave in a manner consistent with their attitudes, behavior being measured by statements of intention and by behavioral commitment responses. A Likert-type summated rating scale was developed and utilized as the attitude measuring instrument in the study. A split-half reliability coefficient of .95 and a test-retest reliability of .94 were obtained. A test battery containing the attitude scale, a demographic questionnaire, a social desirability scale and an information test was administered to 389 college students in their classrooms. The validity study utilized two behavioral indices: 1) behavioral intent statements which were gathered following completion of the test battery, and 2) behavioral commitment responses as obtained in individual interviews. The second criterion involved 100 telephone interviews which took place from six to ten weeks after classroom testing. An additional 20 Ss followed up with personal interviews. Both criteria measures constituted Guttman scales. Several secondary issues were investigated. 1. As attitude scales have routinely been validated by use of signed behavioral intent statements the effect of anonymity was examined. Of the total number of Ss participating in the test battery 86 were requested to sign the intent statements; all others were anonymously filled out. 2. In order to evaluate any sensitizing effect on behavioral commitment responses, one-half of those Ss ticipating in the individual interviews had not received any testing in the classroom situation. 3. The Marlowe-Crowne Social Desirability Scale was used to control or the effect of social norms on attitude and behavioral scale scores in approval dependent individuals. 4. An information test was incorporated into the test battery to ascertain the relationship between cognition, affect and behavior. The major results lent strong support to the experimental hypothesis; Ss did tend to behave in a manner consistent with their measured attitudes. Validity coefficients of .38 (attitude and behavioral intent statements), .58 (attitude and behavioral commitment responses) and .64 (composite prediction) suggested that under certain conditions predictive salience can be obtained from attitude scale scores. With regard to the secondary measures, no significant effects were found for anonymity, pretest sensitization, or social desirability. There was some evidence which suggested a relationship between level of information and attitude; however, the results were not conclusive. Empirical findings did support the medical supposition that some people at least (i.e., college students) will be favorably disposed toward posthumous organ donation. Twenty percent of those Ss contacted made a substantial commitment. Further research is planned in order to gain normative data on more representative samples of the total population.

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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.