Tesis sobre el tema "Donation and transplantation"

Solid organ transplantation is a rare health intervention that saves lives, improves quality of life and, where there is an alternative such as dialysis, is cost-effective. However, organ transplantation is a complex intervention that is limited by the number of organ donors, and requires life-long immunosuppression of the recipient. Infections are a common complication of organ transplantation, and a major cause of death for transplant recipients. Donor-derived infections, while rare, are of particular concern for transplant clinicians, as a potentially avoidable consequence of transplantation. Donation practice must balance the risks of infection transmission with the risks of overly restrictive donation policies that could limit this life-saving intervention. Post-transplant, clinicians must remain vigilant for new recipient infections, whether donor-derived, reactivating or arising anew. In this thesis, I generate novel data regarding aspects of infections affecting solid organ donation and transplantation where current practice can be improved, focusing in particular on blood-borne viruses and preventable post-transplant infections. Theme 1: Assessment of potential organ donors for blood-borne virus transmission risk All potential solid organ donors are rigorously screened for their suitability to donate. One reason potential donors may be declined is where there is perceived to be an increased risk of transmission of infectious diseases, including blood-borne viruses (BBV) such as hepatitis B (HBV), hepatitis C (HCV) and human immunodeficiency virus (HIV). Unexpected BBV transmissions have indeed led to devastating recipient outcomes. However, testing and treatment for these conditions have evolved substantially in recent years and decades. Nucleic acid testing (NAT) is now both rapidly available and highly sensitive for infection. Implementation of NAT reduces serological window periods to smaller eclipse periods. Meanwhile, HCV has become curable in the vast majority of cases, HBV can be prevented with vaccination, or effectively suppressed, and even HIV now has effective suppressive treatments. Given these developments, a reassessment of suitability of potential organ donors with BBV, or risk factors for their acquisition, is warranted. The first aim of this thesis was to understand whether transplant clinicians can correctly interpret hepatitis serology and then consistently judge potential donor transmission risk and donation suitability. This is explored in Chapter 2 through an anonymous, self-completed, cross-sectional survey distributed electronically to Australian and New Zealand clinicians involved in kidney transplantation (2014-2015). We compared respondents’ interpretation of clinical scenarios with paired donor and recipient hepatitis B and C serology to recommendations in clinical practice guidelines. We then used logistic regression modelling to investigate characteristics associated with decisions on transplant suitability in scenarios with poor (<50%) guideline concordance. The 110 survey respondents in our sample had demographic characteristics representative of the target workforce. While donor and recipient hepatitis statuses were largely well understood, transplant suitability responses varied among respondents. For an HBV surface antigen (HBsAg) positive donor and vaccinated recipient, 44% of respondents suggested the donor was unsuitable for transplant (guideline concordant) but 35% suggested the donor was suitable with prophylaxis (guideline divergent). In four scenarios with transplant suitability guideline concordance of <50%, acute transplant care involvement predicted guideline concordant responses (OR [odds ratio] 1.69, p=0.04). Guideline concordant responses were chosen less by hepatologists, intensive care doctors (OR 0.23, 0.35 respectively, p=0.01), and New Zealanders (guideline concordant responses OR 0.17, p<0.01; alternative responses OR 4.31, p<0.01). Hence, we conclude that despite broadly consistent interpretations of hepatitis serology by respondents, resulting transplant suitability decisions vary, and often diverge from guidelines. Having established variability between clinicians, this thesis next aimed to describe current practice regarding potential donors with increased risk for BBV transmission in Chapter 3. Specifically, we aimed to describe the size and characteristics of this group, whether they proceeded to donate, and reasons not donating. To do this, we conducted a cohort study of all potential organ donors referred in New South Wales, Australia between 2010 and 2018. Baseline risk potential donors were compared to potential donors with increased BBV transmission risk, due to a personal history of HIV, HCV or HBV and/or behavioural risk factors. We found 624/5749 potential donors (10.9%) perceived to have increased BBV transmission risk. This included 298/5749 (5.2%) with HCV (including HBV co-infections) and 239/5749 (4.2%) with increased risk behaviours (no known BBV). Potential donors with HCV and those with increased risk behaviours were younger and had fewer comorbidities than baseline risk potential donors (p<0.001). Many potential donors (82 with HCV, 38 with risk behaviours) were declined for donation purely due to perceived BBV transmission risk. Most were excluded prior to BBV testing. When potential donors with HCV did donate, they donated fewer organs than baseline risk donors (median 1 versus 3, p<0.01), especially kidneys (OR 0.08, p<0.001) and lungs (OR 0.11, p=0.006). In summary, many potential donors were not accepted due to perceived increased BBV transmission risk, without viral testing, and despite otherwise favourable characteristics. This suggests the potential for transplantation rates to be substantially increased if more potential donors with HCV and/or increased risk behaviours were accepted. Taken together, the findings of variable donor suitability decision-making, and the rejection of otherwise high-quality potential donors without viral testing, suggest there may have been missed opportunities to donate from some potential donors with positive serology or increased risk behaviours. Supporting clinicians to identify such previously rejected potential donors with an acceptable risk profile, and using these organs for transplantation, may have the potential to significantly increase donation rates. Theme 2: Estimating the actual risks of BBV transmission To support change in clinical practice, estimates of the risks posed by increased risk donors are helpful. Blood-borne virus rates vary internationally, and no data from the Australian context was available. We synthesised existing literature to produce Australian estimates of the actual risk posed by potential donors with increased risk behaviours for BBV only (Chapter 4). We conducted a systematic review and meta-analysis of cohorts reporting incidence and prevalence of HIV, HCV and HBV among increased risk groups in Australia. The residual risks of window period infections were estimated in the setting of negative serology and NAT. Residual risk of HIV was found to be highest among men who have sex with men at 4.8 per 10,000 persons testing negative with serology (95% CI: 2.7-6.9), and 1.5 per 10,000 persons with additional negative NAT (95% CI: 0.9-2.2). Residual risk of HCV was highest among injecting drug users (IDU) with a residual risk of 289 per 10,000 persons (95% CI: 191-385) with negative serology, and 20.9 per 10,000 persons (95% CI: 13.8-28.0) with additional negative NAT. Residual risk for HBV was highest in IDU with 98.6 window period infections per 10,000 with negative serology (95% CI: 36.4-212.7) and 49.4/10,000 with additional negative NAT (95% CI: 18.2-106.9). We concluded that the absolute risks of window period infection are low among Australian groups with increased risk but negative viral testing. These findings inform shared decision-making by clinicians and recipients and have the potential to increase organ donation rates from increased risk donors where risks are considered tolerable. To understand the magnitude of transmission risks from donors with positive hepatitis serology, we next examined a cohort of linked donors and recipients (Chapter 5). The aims of this work included describing the rates of transmission and non-transmission of BBV from donors with BBV to recipients, and identifying any previously unrecognized transmissions from donors perceived to pose a baseline transmission risk. To do this, we linked transplant registries with administrative health data for all solid organ donor-recipient pairs in New South Wales, Australia, 2000-2015. All new recipient notifications of HBV, HCV or HIV after transplant were identified. Proven/probable donor-transmissions within 12 months of transplant were classified according to a published US algorithm. Of 2,120 organ donors, there were 72 with a viral infection (9/72 active, 63/72 past). These 72 donors donated to 173 recipients, of whom 24/173 already had the same infection as their donor, and 149/173 did not and so were at risk of donor-transmission. Among those at risk: 3/149 recipients had proven/probable viral transmissions (1 HCV, 2 HBV); none were unrecognised by donation services. There were no deaths from transmissions. There were no donor-transmissions from donors without known BBV. Our findings confirm the safety of organ donation in an Australian cohort, with no unrecognised viral transmissions and most donors with viral infections not transmitting the virus. The results support targeted increases in donation from donors with viral infections. Data-linkage can enhance current biovigilance systems. The local evidence of transmission risks generated in Chapters 4 and 5 provide much-needed data to tackle the evidence and practice gap established in Chapters 2 and 3. This allows the implementation of changes in clinical donation and transplantation practice which could safely increase donation rates. Theme 3: Recipient infections after transplantation Another finding from the research in Chapter 5 was the identification of a substantial number of new BBV infections that were unrelated to donor transmission risk. Beyond the 3 identified proven/probable transmissions reported above, an additional 68 recipients had new virus notifications, of whom 2/68 died due to HBV infection. The infections in these 68 recipients may have been undetected late transmission, reactivating HBV, or de novo infections. Substantial preventative measures are available for these conditions including vaccination and avoiding risk-exposures. Stimulated by this concern about preventable non-transmitted infection, Chapter 6 of this thesis aims to understand the burden of notifiable infections post-transplant, which often have known preventive strategies. To do this, we conducted a cohort study of all solid organ recipients transplanted in New South Wales, Australia, 2000-2015. We used data-linkage to connect transplant registers to hospital admissions, notifiable diseases database, and the death register. We then calculated standardised incidence ratios (SIR) relative to general population notification rates, accounting for age, sex, and calendar year, and identified infection-related hospitalisations and deaths. Among 4,858 solid organ recipients followed for 39,183 person-years, there were 792 notifications. Influenza was the most common infection (532 cases, incidence 1358/100,000 person-years, 95%CI:1247-1478), with the highest prevalence within 3 months post-transplant. The second most common was salmonellosis (46 cases, incidence 117/100,000 person-years, 95%CI:87-156), followed by pertussis (38 cases, incidence 97/100,000 person-years, 95%CI:71-133). Influenza and invasive pneumococcal disease (IPD) in transplant recipients showed significant excess cases compared with the general population (influenza SIR 8.5, 95%CI:7.8-9.2, IPD SIR 9.8, 95%CI:6.9-13.9), with high hospitalisation rates (47% influenza cases, 68% IPD cases) and some mortality (four influenza and one IPD deaths). By 10 years post-transplant, cumulative incidence of any vaccine-preventable disease was similar for most transplanted organs at 12%, except for lung recipients, where it was nearly 30%. Gastrointestinal diseases, tuberculosis and legionellosis had excess cases among transplant recipients, although there were few sexually transmitted infections and vector-borne diseases. Improved vaccination programs, health education, and pre-transplant donor and recipient screening have the potential to reduce preventable infections among transplant recipients. Conclusion: This thesis explores some ways in which infectious diseases impact organ donation and transplantation, and identifies areas where clinical practice could be improved. Transplant clinicians need more support to interpret hepatitis transmission risk as they have variable interpretations of suitability. Many potential donors have increased risks for BBV transmission, with otherwise favourable characteristics, and did not donate. Actual transmission risks from both Australian donors with BBV and potential donors with increased risk behaviours are, in absolute terms, low. A reconsideration of risk profiles for potential donors with increased BBV transmission risk could materially increase organ donation rates in Australia. In addition, organ transplant recipients have significant post-transplant infections, including both BBV and other notifiable infections such as vaccine-preventable and gastrointestinal infections. Important infections post-transplant could be prevented by improved vaccination uptake and optimised strategies, donor and recipient screening for latent infection, and donor recipient education.

On December 3rd, 1967, Dr Christian Barnard performed the world's first human heart transplant. This medical milestone propelled the technique of organ transplantation into the public arena, and simultaneously created a need for human organs that has never been met. The disparity between the numbers of organs needed for transplantation and the numbers of organ donated has generated substantial research. Most of this research has focused on individual characteristics and behaviours in an attempt to understand the individual's decision to donate. In contrast, the research in this thesis emanates from the position that we must first investigate how organ donation and transplantation is socially understood. The theory of social representations (Moscovici, 1984) proclaims an interdependence between the individual and the social, and their inseparability in the construction of social knowledge. Conceptualised thus, organ donation and transplantation moves from being understood in terms of an individual decision to a socially derived way of understanding a medical practice. Thus, the focus of the research presented in this thesis is a holistic conceptualisation of organ donation and transplantation as socially constructed knowledge. Three studies were conducted, each addressing this issue from a different methodological perspective. The first study, which was exploratory in nature, investigated whether there was a representation pertaining to organ donation and organ transplantation, and traced the development of the representation through the printed media. Drawing from research into the structural properties of a representation (Abric, 1993, 1996), and the notions of themata, anchoring and objectification (Moscovici, 1984, 1993), the findings from this study set the direction and design of the two studies that followed. The main finding from this study was the suggestion that what was initially considered to be two representations was better understood as one representational field organised around conflicting images of organ donation and transplantation as a Gift of Life and the Mechanistic removal and replacement of body parts. The findings, however, from the first study suggested a stasis to the representational field that did not accommodate the dynamism implied. Thus, the second study extended the findings of the first study and investigated the representational field through discourse from focus group discussions. The theoretical position here conceptualised consensus as consensual reality (Rose et al., 1995), and investigated the suggestion that the core of the representation is hierarchically arranged into normative and functional dimensions (Guimelli, 1998). The findings from this second study evidenced the contradictory nature of discourse around the issue of organ donation and transplantation. These were discussed in light of Billig' s (1988) rhetorical position of the role of argumentation in social thinking. The co-existence of contradiction was suggested through the differential elicitation of the normative and functional dimensions of the core (Guimelli, 1998). The final study extended the findings of both earlier studies through a delineation of the core and peripheral elements within the representational field so as to specifically investigate the dynamic co-existence of contradiction within the one representational field. The study employed a mail-out questionnaire embedded with 8 experimental conditions. This manipulated two tasks, scenario and rating scale and word association, in order to investigate the elicitation of the representation in accordance with context. This study developed the notion of themata (Markova, 2000), the role of contradiction in a representation (Wagner et al., 2000), reflexive and non-reflexive thought, and an understanding of consensus as consensual reality (Rose et al., 1995). The major conclusion of the thesis is that an investigation of the issue of organ donation and transplantation within the theoretical framework of social representations theory (Moscovici, 1984) reveals a contradictory representational field organised around the dialectical notions of Life and Death, emanating as two, seemingly contradictory, images of organ donation and transplantation as a Gift of Life and the Mechanistic removal and replacement of body parts. Moreover, the co-existence of this contradictory representational field is maintained through the differential elicitation of the normative and functional dimension of the representation in accordance with social context. An integration of the findings within the theoretical tenets of social representations theory is given, addressing the interdependence between the representational process and what is being represented. The practical implications of these findings as they relate to the societal issue of organ donation and transplantation are also discussed.

Since the 1950’s procuring organs for cadaveric transplantation has been based around a “gift of life” discourse, institutionalised through the carrying of donor cards/driving licence or registration on the NHS Organ Donor Register. Yet regardless of whether and how the deceased recorded their wishes to donate, their next-of-kin are always whether organs can be removed. Little is known about the reasons families give for refusing or agreeing to an organ donation request. In order to identify the circumstances in which an organ donation request is more likely to be accepted or refused by the family of a brain stem dead individual, semi-structured interviews were carried out in various areas of Scotland in order to ascertain donor and non-donor relatives’ beliefs, attitudes and experiences. The findings suggest that wider cultural beliefs embedded in society about the value of gifting, death and the body are brought to the specific context of an organ donation request. It is the interactions between these values and other factors, such as familial and hospital support and dynamics and the perceived value of the outcome from donation affects whether families will donate or not. The findings of such an investigation will have obvious policy implications for those interested in increasing the present UK organ procurement rate and can also inform debates about the merits of introducing alternative systems. However, a study of organ donation and transplantation can also provide the sociologist with a unique insight into several engaging areas of sociological interest: modern gift practices (including altruism and social exchange theory), the way meanings are constructed onto dead bodies by different groups, of how and when death is defined, and finally, can lead insight into an intricate relationship about how individuals’ view the relationship between personal, social and corporeal identity.

This thesis examines the position of children who donate regenerative tissue to potentially save the life of another. The great good that can come about through their participation is at the cost of the donor child undergoing physically invasive and unnecessary medical procedures. The non-therapeutic element of a child’s involvement brings about legal and ethical issues that are the subject of this thesis. The central aim of this thesis is to determine if Australian child donors are treated appropriately and are sufficiently protected in acting as tissue donors, and whether a new regulatory response is needed for their benefit. The research engages with the ethical literature and legal analysis, and complements these theoretical perspectives with a qualitative analysis of interviews with medical professionals who are experienced in dealing with child donors. This research demonstrates that domestic regulation – in the form of law and professional guidelines – has had little influence on how donor children are treated in clinical practice. Until recently, the practical safeguards offered to protect donor children from physical and psychological harm also varied between hospitals and were often limited in nature. However, there has been a recent trend towards improved, standardised care for Australian donor children due, primarily, to a desire to conform to international accreditation standards. Two conclusions are reached: first, donor children have, to date, not been sufficiently protected – either theoretically in law or practically through consistent national treatment; and, second, existing domestic regulation has failed to effectively regulate this area. I recommend implementing a new domestic regulatory response to benefit Australian donor children. There is a need to provide donor children with more attention, to listen to them more and for them to be consistently treated around the country. To achieve this, engagement with the medical profession is essential.

This thesis is an investigation into several proposed ways of increasing the supply of organs for transplantation purposes. It starts from a consideration of two sorts of donors which are already in use: humans declared dead according to brain-based criteria and nonhuman animals. In the first chapter I attempt to provide a theoretical underpinning for the brainstem criterion of brain death. I also criticise certain rival theories. In the second chapter I consider what constraints govern what we may do to the newly dead body - the fact that someone is dead does not mean we may treat their corpse as we please. I consider Professor John Harris' strong `opting out' policy, and argue against it. I briefly discuss other alternatives to the UK's present `opting in' system - `presumed consent' and `required request'. And I consider the problems generated by the proposed use as donors of another category of human cadaver - people declared dead according to cardiorespiratory criteria. The third chapter is an investigation into xenotransplantation - the use of organs from nonhuman animals. I argue that using animals `just because' they are animals is ethically indefensible. Instead I attempt to justify the killing of (some) animals as organ donors on the grounds that their interest in continued life is weaker than that of a human. But this has some counterintuitive implications concerning arational members of our species. In the final chapter I discuss the possible use of the `worst off' category of arational humans - the permanently and irreversibly unconscious. I argue that we have moral obligations to these people which do not stem only from a consideration of their interest in life. However, I think that we may use such people as donors under specialised conditions: if we are as certain as we can be that they are irreversibly unconscious, if their family (and ideally the donor too) have requested it, and so long as it can be done without distress to the public. Under no other circumstances do I think humans ought to be killed for organs.

Transplantation is the optimal therapy for end-stage organ failure, but the utility of this intervention is limited by a critical shortage of donor organs. This research sought to examine opportunities to improve the donor referral process, and to increase donation rates. Chapter 2 Increased organ donation rates have been exceeded by a rise in referral of potential organ donors for evaluation. This study sought to characterise potential organ donor referrals in NSW and identify factors associated with non-donation through a retrospective cohort study of NSW OTDS referral logs 2010-2015. Comorbidity prevalence was described, and logistic regression used to identify comorbidities influencing referral outcome and determine predicted probability of donation. Most comorbidities increased in prevalence over time. Comorbidity burden was higher among non-donors than donors. Significantly (p<0.01) associated with non-donation were age >65, and history of malignancy, or cardiac, kidney or liver disease. Predicted probability of a referral donating varied <1% to 54% with comorbidity burden. As donor referral volumes increase, understanding characteristics associated with non-donation may improve the efficiency of the referral process. Chapter 3 Although the risk of primary brain tumour (PBT) transmission via organ donation and transplantation is low, some donor referrals with PBTs may be declined due to concerns regarding biovigilance. This retrospective cohort study aimed to describe transmission risk and donation outcome of referrals with PBT and transplant recipients 2010-2015. Referrals were characterised and data linkage was used to identify any transmission of PBT from donor to recipient. Of 76 PBT referrals, 18 (24%) were declined due to perceived PBT transmission risk and 10 (13%) donated. All PBT donors had WHO-I or -II tumours. No events of PBT transmission were identified. There exists opportunity to increase donation rates through utilisation of PBT referrals.

General Abstract Objective: In April 2006, the Scottish Liver Transplant Unit (SLTU) became the first NHS transplant unit in the UK to offer the option of Living Donor Liver Transplantation (LDLT). This represented a unique opportunity to evaluate the functional and psychosocial impact of LDLT upon healthy donors and their recipients. Subsequent aims were to investigate the challenge of introducing LDLT in Scotland and to establish the perceived deterrents and attractions of the procedure. An additional aim was to evaluate the impact of Living Donor Kidney Transplantation (LDKT) upon donors and recipients. Design: A series of cross sectional and longitudinal studies were designed for the purpose of this thesis (3 quantitative, 2 qualitative, and 1 mixed methods). Method: Self report questionnaires were used in each of the quantitative studies, with the addition of neuropsychological computerized tests in two studies. Semi-structured interviews were employed in the qualitative studies. Main Findings: •Prior to its introduction general support for the option of LDLT was found, although it was highlighted that the risk involved was not well understood by the general public. •Since becoming available LDLT has not been a readily acceptable treatment option from the perspective of patients due to the perceived risk for the donor, but it may be considered as a “last option”. Family members were motivated to save their loved one’s life but the personal implications of donating resulted in reconsideration of LDLT. • Staff at the SLTU perceived a lack of family commitment in relation to LDLT, which is explained as a cultural factor contributing to the slow uptake of LDLT. In Scotland, a donation from a younger to an older generation is not easily accepted. This, in addition to patients’ optimism that a deceased donation will arrive, and the poor health of potential donors, is thought to have affected the uptake of LDLT. As has the unit’s conservative approach to the promotion of LDLT. This approach is the result of a perceived reduction in the need for LDLT and a preference to avoid the risk to a healthy donor and conduct transplants with deceased donations. • In over 3 years, only one couple completed LDLT. The recipient showed functional and psychosocial improvement from pre to post procedure, whilst the donor showed slight deterioration in aspects of quality of life 6 weeks post donation, which did not always completely return to a baseline level by 6 months. The donor made sacrifices to provide her husband with a fresh start to life and unmet expectations were found to effect quality of life. •Willingness to become a liver donor is not thought to be influenced by the frame of the information provided. •Like the LDLT donor, LDKT donors experience some functional and psychosocial deterioration at 6 weeks post donation, but donors largely recover by 6 months post donation. However, the anticipated benefit to recipients was not evident and may not be quantifiable until after 6 months post operation. Conclusion: This thesis has added to current knowledge on living organ donation and specifically represents the first psychological evaluation of a UK LDLT programme. The slow uptake of LDLT was unexpected and has resulted in informative, novel research.

Urban Bioethics
M.A.
Organ transplantation has the potential to improve and prolong the lives of many chronically ill people. However, organs are a scarce resource and a commodity to which not everyone has equal access. Equity issues are particularly evident amongst African Americans concerning kidney donation and transplantation. In this paper, I discuss the history of kidney transplantation and the disparities that exist in the African American community for both organ donation and transplantation. I explain how the organ allocation system has structural barriers that do not account for the social determinants of health. Then I explore the significant barrier of African Americans’ mistrust of the health care system and its role in kidney donation and transplantation. I use the principles of urban bioethics to discuss possible solutions to mistrust including community engagement, diversifying the physician work force, and concepts that move beyond cultural competency to cultural humility and structural competency.
Temple University--Theses

Organ donation is traditionally based on the notion of making a gift based on altruism. An important aspect of ‘altruistic gifting’ is commitment to a solidaristic approach to meeting transplant needs. In line with this, people are encouraged to donate their organs at death to a common pool for collective provision, or donate a live organ to another freely. Given a chronic organ shortage, proposals have been made to change this system to increase donation. Proposals include introducing some organ market or payment in the form of a reward to incentivise live or deceased donation. However, these proposals have been opposed because of the grip of ‘altruistic gift’ as the only ethically acceptable way to procure and distribute organs. To support the ethical acceptability of other systems, ‘altruistic gift’ has been subject to various criticisms. One criticism is the moral relevance of altruism: people may donate on other motives other than altruism; or, altruism is not the motive that underpins most deceased organ donations. Another criticism is the moral value of altruism: even if deceased organ donations are in general altruistic, altruism does not express communal virtues like generosity that support solidarity. A third criticism is the value of the concept of altruism when understood in the pure sense: ‘pure altruism’ fashions an unnecessary or false dichotomy – gift versus sale – in the way people can ethically relate and help each other. Consistent with or following this criticism, it has been argued that use of a financial reward to incentivise donation can be compatible with preserving donation as altruistic albeit in a ‘non-pure’ sense. ‘Altruism’ and reward can co-exist as motives for donation. This thesis concerns itself centrally with the third criticism. It argues that the concept of altruism delineates a distinctive moral ‘perspective’ of a common humanity that engenders a devotion to others’ interests. Accordingly, as I argue, ‘non-pure’ definitions of altruism are misleading as to how a financial reward can be compatible with altruism. From this, the thesis argues that introduction of a financial reward for organ donation would not preserve donation as altruistic. Based on an understanding of altruism as also a motive for ‘creative’ relationships, the thesis counters criticisms of its relevance and value to deceased organ donation under a gift model. As part of its legal analysis, the thesis considers the antithesis of ‘altruistic gift’: the idea of organs as property which places individual control on their disposition at its moral centre. It has been argued that organs should be owned as property so that individuals can sell them, or transmit them to relatives so that relatives can claim payment from donation. To provoke thought on whether organs should be owned as private property like any other, the thesis proposes an inheritance regime for organs with family as default successor.

Idag väntar många patienter på transplantation av ett eller flera organ. Med nuvarande lagstiftning identifieras inte alla potentiella organdonatorer och därför kan inte dessa organ tas tillvara. Regeringen har därför tillsatt en utredning om det kan bli aktuellt med organdonation efter hjärtdöd. Detta uttrycks internationellt som Donation after Cardiac Death (DCD). Denna studiens syfte var att beskriva intensivvårdssjuksköterskors uppfattningar, tankar och känslor, samt förbereddhet kring begreppet donation efter hjärtdöd. Sju intervjuer av intensivvårdssjuksköterskor på två sjukhus i västra Sverige genomfördes och data analyserades med kvalitativ innehållsanalys. Resultatet presenteras som fyra kategorier: Upplevda farhågor och potentiella konsekvenser av DCD, Mötet med anhöriga, Tankar och känslor kring organisatoriska svårigheter och Tankar och känslor kring etiska dilemman. Slutsatser var att de intervjuade intensivvårdssjuksköterskorna ställde sig positiva till DCD och tidigare forskning visar att det kan vara en källa till ökning av organtillgång förutsatt att det är organisatoriskt genomförbart.
Today there are many patients on the waiting list to receive one or more organ transplants. With the current Swedish legislation not all potential organ donors are identified and therefore these organs are omitted as potential transplants. The government is in the process of investigating the possibility to implement organ donation after cardiac death, i.e. DCD. The aim of the study was to describe ICU nurses’ understanding, thoughts and emotions, as well as their preparations regards to DCD. Seven ICU nurses at two hospitals in western Sweden were interviewed and data were processed through qualitative content analysis. The results are presented as four categories: Perceived fears and potential consequences regarding DCD, the meeting with relatives, Thoughts and emotions regarding organizational difficulties and Thoughts and emotions regarding ethical dilemmas. Conclusions derived from the findings in the interviews with ICU nurses were a fully positive perception of DCD and that DCD could mean an increase in the amount of available organ donors given that legalisation and organisation processes are clear and possible to carry out.

Cardiac transplantation is the treatment of choice for eligible patients with advanced heart failure; however, it is limited by a critical shortage of suitable organs from traditional brain-dead donors. Organs donated following circulatory death (DCD) have been used to successfully expand the pool of organs available for kidney, liver, and lung transplantation; however, concerns regarding the severity of injury sustained by the heart following withdrawal of life sustaining therapy have deterred the clinical transplantation of DCD hearts. Investigations aiming to optimize the resuscitation, preservation, and evaluation of DCD hearts may facilitate the development of an evidence based protocol for DCD heart transplantation that can be translated to the clinical area and expand the donor pool. Therefore, the objectives of this thesis are to develop a clinically relevant large animal model of DCD and gain a greater understanding regarding the physiologic impact of donor extubation on the DCD heart, demonstrate as a ‘proof-of-concept’ that utilizing an approach to donor heart resuscitation, preservation, and evaluation that is tailored to the DCD context can facilitate successful transplantation, and finally to investigate ways to optimize the resuscitation, preservation, and evaluation of DCD hearts for transplantation. The results of this thesis may then be used to inform the development of an evidence-based protocol for DCD heart transplantation that can be translated to the clinical area. The clinical adoption of such a protocol has the potential to expand the donor pool and improve outcomes for patients with end-stage heart failure.
May 2017

Although it is often suggested that Australia’s low deceased donation rate is essentially a “virtuous artifact” due to the superiority of its public health system and its world-leading levels of public safety (leading to reductions in the types of death that may lead to organ donation), this widely accepted belief, which I have termed “Failure Dressed as Success”, has not been critically examined relative to worldwide organ donation performance. In this thesis I examine the “Failure Dressed as Success” hypothesis as an explanation for the low deceased organ donation rate in Australia, compare and contrast the effectiveness of organ donation policy in Australia in increasing its donation rate relative to international experience, and, consider alternative explanations for what may be the true reasons why Australia, for more than a quarter century, has had low deceased donation rates relative to other developed countries. This study combines three methods for examining the “Failure Dressed as Success” hypothesis: a comprehensive literature review of international organ donation history, policies and transplantation outcomes; an analysis of Australian organ donation and transplant policy from 1968-2012 relative to established determinants of deceased organ donation (i.e. causes for the types of death that are most commonly associated with organ donation); and a quantitative analysis of worldwide organ donation rates from 1989-2012 for the 90 countries that have reported donation and transplant activity.

Тема є надзвичайно важливою, оскільки інститут регулювання донорства та трансплантації є недосконалим. Вітчизняному законодавству не вистачає інструментарію у вигляді підзаконних нормативно-правових актів та механізмів для реалізації засадних, базових функцій трансплантації та донорства, оскільки воно не сприяє вирішенню головної проблеми трансплантології – недостатності донорського матеріалу. Довгий час дана сфера була ігнорованою і не розвивалась, хоча в Україні були успішні випадки проведення трансплантації, наявні кваліфіковані спеціалісти, які можуть її проводити, а також багато наукових розробок для вдосконалення законодавства в сфері донорства та трансплантації.

This work represents a significant contribution to the body of knowledge in the area of renal transplantation as it brings together the research related to policy analysis, empirical research, and cultural and religious issues related to organ donation and transplantation among South Asians in the UK. The candidate's work in this area is the first in the UK to systematically document and map a national picture of kidney transplant waiting lists and to identify and examine the complex reasons underlying how and why patient ethnicity impacts upon the likelihood of receiving a kidney transplant. The candidate has also developed a new evidence-base exploring the adequacies of the existing procurement arrangements and the implications of introducing any alternative policies within the context of a multi-ethnic and multifaith UK. Finally, the candidate's work has focused on developing an evidence-base of the public perceptions, attitudes, and religious viewpoints towards organ donation and transplantation among a cross-section ofthe South Asian population. The candidate's published works have been the foundation blocks for stimulating and informing the debate on the provision of renal transplant services for minority ethnic groups through the generation of an empirical evidence-base in a subject area which has traditionally relied upon anecdotal evidence. The evidence-base illuminates a very complex issue which has multi-faceted solutions that need to be addressed in different settings.

This dissertation examines the extent to which individual-level and social network-level factors explain disparities in living donor kidney transplantation (LDKT) and considers the moral implications. Paper One examines whether patient characteristics explain racial disparities in the rate of donor presentation and LDKT in a sample of 752 potential kidney recipients and 654 potential kidney donors. Propensity score matching and subclassification were used to balance the patient characteristics. Survival models revealed that only 24% of blacks compared to 39% of whites would have at least one potential donor evaluated within the first year, even after accounting for differences in the distribution of patient characteristics. Thus, lower rates of donor presentation among black recipients cannot be explained by differences in individual-level characteristics. Paper Two examines whether differences in social networks contribute to disparities in LDKT. Using interview and medical record data from a representative sample of 389 dialysis patients in Greater Boston and a subsample of 302 alters, we found that social network characteristics, especially network size, were strongly predictive of pursuing LDKT. Significant racial disparities in health and medical distrust among social networks of black patients present compelling evidence for network effects. Fewer network members of black patients may be eligible for donation owing to compositional health differences, and those eligible may be less willing to donate due to greater distrust or poor socioeconomic position. Paper Three argues that society ought to be concerned with previously neglected disparities in LDKT, specifically the fraction stemming from disparities in social networks because networks provide one pathway by which inequalities can be perpetuated throughout society and over time. Insofar as social networks are influenced by an unjust distribution of social forces, and social networks influence life chances by restricting (or enhancing) one’s ability to obtain a LDKT, then life chances of dialysis patients are unjustly determined by social networks. Potential policies aimed at providing compensatory damages to patients whose networks have been adversely affected by the unjust influence of social determinants are examined.

Bakgrund: Det är mer fördelaktigt att en organdonation sker med levande donator istället för avliden donator, då det är lägre risk för avstötning. Det är många som väntar på att få en njure vilket gör att levande donation blir allt vanligare. I Sverige genomfördes 147 levande njurdonationer år 2019. Njurdonation ökar vilket leder till ökat behov av kunskap och förståelse hos sjuksköterskan. Syfte: Syftet var att belysa donatorns upplevelser i samband med njurdonation. Metod: Studien genomfördes via en litteraturstudie, där 12 vetenskapliga artiklar granskades och analyserades från två databaser. Resultat: Resultatet består av tre teman och sju subkategorier. Temat Kommunikation med subkategorierna upplevelsen av kommunikation med vårdpersonal och anknytning till mottagaren, temat upplevda känslor med subkategorierna oro, glädje och hopp, temat upplevelsen av stöd med subkategorierna socialt stöd och ekonomiskt stöd. Slutsatser: Upplevelserna hos donatorerna var individuella, genomgående var upplevelsen av bristande kommunikation och oro. Bristen på kommunikation indikerar till ett ökat kunskapsbehov hos sjuksköterskor för att göra donationsupplevelsen bra.
Background: It is more advantageous that a organdonation to take place with a living donor instead of a deceased donor, as there is a lower risk of rejection. There are many waiting for a new kidney, thus living donations are becoming more frequent. In 2019 there were 147 living kidney donations in Sweden. Because of the increase in kidney donations, the nurses are in need of more knowledge and understanding of the whole procedure. Aim: The aim was to give an account of the donor’s experience throughout the process of donating a kidney. Method: The study was conducted through literary research, where 12 scientific articles from two databases were reviewed and analyzed. Result: The result consists of three themes and seven sub categories; Communication - Communication experience between patients and medical staff andConnection to the recipient, Emotions - Worry, Joy and Hope, Support - Social support and Economical support. Conclusion: The donor’s feelings were varied, but overall they felt a lack of communication and therefore worry. This indicates that the nurses are in need of improved communication skills in order to make the donation experience as good as possible.

This thesis sought to improve our understanding of how kidneys become injured as a consequence of organ donation, with the aim of improving the outcomes of transplantation. Every year, hundreds of patients on the waiting list die whilst awaiting a kidney transplant. With an ever-increasing demand for suitable organs, supply cannot keep up with the pressures on the transplant waiting list. As a consequence the transplant community are forced to use organs that previously would not have been considered suitable for transplant, including from older donors with additional comorbidities. This thesis aimed to develop an understanding as to how the kidney becomes injured during the donation process, identifying which key cellular homeostatic processes are disturbed as a consequence of donation. The thesis outlines the experimental development of rodent models of organ donation replicating the donation process for donation after brain death (DBD) and donation after circulatory death (DCD) donors and also the development of a kidney ischaemia reperfusion injury (IRI) model. Proteomics was subsequently used to identifying global protein alterations in the kidney as a consequence of brain death and ischemia reperfusion injury using bioinformatics tools to identify involvement of cellular pathways. The results indicated alterations in mitochondrial function and metabolic homeostasis occurring following brain death. Alterations in cellular metabolism and mitochondrial function were then confirmed using metabolomics and mitochondrial functional assays. I subsequently evaluated how alterations in cellular hypoxia and the hypoxia inducible factor system is altered in the brain dead organ donor kidney and aimed to target this system as a means of conditioning the brain dead organ donor to prevent mitochondrial and metabolic mediated injury to kidney cells following brain death. This involved exploring the role of prolyl hydroxylase inhibitors, including dimethyloxalylglycine, on mitochondrial function and whether this could be a therapeutic target in organ donation. This thesis provides important insights into the mechanism of injury of kidneys following brain death, providing evidence that even before procurement and preservation in the DBD donor alterations in mitochondrial function and metabolic homeostasis occur. I provide preliminary data on the use of prolyl hydroxylase inhibitors in altering mitochondrial function. I also outline my involvement in other ongoing projects in organ donation and machine perfusion that also aim to improve the outcomes of deceased donor kidney and liver transplantation.

Donor organ shortage is a major barrier to the progress of liver transplantation; options to widen the donor pool include use of marginal donor grafts and those from donors after circulatory death (DCD), despite risks of early graft failure. This thesis studies the key metabolic feature differences between DCD and from donors after brain death (DBD), using combination of microdialysis for tissue fluid sampling, and colourimetry, Coularray and Fourier Transform ion Cyclotron Resistance - mass spectrometry(FTICR-MS) as analytical platforms. The initial study proved feasibility of above methods to identify metabolic changes through cold storage to reperfusion, and the involvement of energy and amino acid metabolism pathways. Comparison of DCD and DBD grafts by microdialysis combined with colourimetry proved energy depletion, and increased lactate/pyruvate ratio in DCD grafts. Metabolomic studies consolidated the findings of primary impact on energy metabolism pathways during cold storage. Both CEAD and FTICR-MS identified key biomarker differences and the effect on tryptophan and kynurenine pathway, and this finding was reproduced in all three metabolomic studies conducted. Over expression of these metabolites in DCD grafts and failed allografts may be related to energy metabolism, and tryptophan and kynurenine could potentially be developed as biomarkers predicting liver graft function.

Currently there is a critical shortage of transplantable organs in the UK. The existing evidence base highlights that cultural and religious norms can hinder familial consent and uptake of registration as an organ donor, particularly within ethnic minority groups. There is a dearth of information relating to the Polish community in the UK. Since the expansion of the European Union and the potential and consequent economic migration of Poles to the UK, this community presents a potential significant contribution to the active transplant waiting list, NHS Organ Donor Register and requests made for organs for donation on behalf of a relative. The aim of the study was to examine in depth, the perceptions of the relationship between deceased organ donation, gift exchange and religion. Due to the exploratory nature of the study, grounded theory methodology was used and one to one interviews were carried out with 31 participants who were recruited using a purposive convenience sampling strategy. This approach allowed for the collection of rich and deep data in a hitherto under-researched issue with the Polish community in the UK. To contextualise the key findings of the relationship, an in-depth analysis of settlement patterns, helping behaviour and experiences of and attitudes toward religion was conducted. The relationship between religion and gift-exchange was perceived to interact in different ways with deceased organ donation depending on the context. For the individual making an end-of-life choice, gift exchange impacted on the perception of the organ as a gift and whether reciprocity was expected, religion shaped views of the need for the body after death and social and cultural norms influenced the view of the 'typical' donor and family discussion of donation. For the relatives, social, religious and cultural norms impacted on death rituals and the conceptualisation of the dead body and experiences of a relative's death. This study contributes to an understanding of the social, cultural and religious norms toward deceased organ donation from a Polish perspective and the implications for policy, health promotion and clinical practice.

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.

The purpose of this ministry project is to educate religious leaders about an alternative to approaching organ donation and organ transplantation, using the Theory of Gift Exchange as the model paradigm. This ministry project is based on the premise that religious leaders generally use dated statistical material, life changing stories, and personal experiences to raise awareness on the subject. Thus, the Theory of Gift Exchange is a different approach and a unique model for religious leaders to begin understanding the complex nature of organ donation and organ transplantation, and ultimately embracing it with less reluctance. The results of this ministry project discovered that practically every religious leader was unfamiliar with the idea of Gift Exchange. However, they were familiar with this concept only as it relates to the exchanging of personal gifts around special occasions and holidays. Thus, the conclusion gathered from this ministry project suggests that the 'Theory of Gift Exchange' is an excellent model to educate about organ donation and organ transplantation. This conceptual idea makes it easy for a religious leader to understand and embrace the subject, and feel less threatened by it, particularly because one can see that the overall intent is about gift giving and gift receiving.

Comment le visage est-il devenu un organe, objet de don et de transplantation ? En partant de ce questionnement, cette thèse investit le milieu de celles et ceux qui ont porté et débattu des projets de transplantation faciale au cours des années 2000 et 2010 en France et au Royaume-Uni. Elle éclaire les conditions sociales selon lesquelles la transplantation faciale a été rendue acceptable, pour les patients opérés et les équipes chirurgicales, les coordinateurs du don d’organes et les proches des donneurs défunts qui permettent le prélèvement. L’enquête a impliqué un investissement approfondi de l’ensemble de la chaîne de la transplantation,reposant sur la collecte d’archives (scientifiques, institutionnelles, médiatiques), sur la réalisation d’entretiens (avec les chirurgiens, les patients, les acteurs du don d’organes et de la régulation médicale, les membres d’associations de personnes défigurées), ainsi que sur une ethnographie des services hospitaliers qui réalisent ces opérations (du bloc jusqu’aux réunions de service). En suivant au plus près ces acteurs, l’enquête éclaire les tensions quel’expérimentation révèle sur son passage.Cette recherche aborde la greffe comme un objet qui articule des questionnements au croisement des institutions, des mouvements associatifs et des expériences du don. La greffe du visage bouscule, tout d’abord, les prétentions des chirurgiens à s’autoréguler. La confrontation des équipes chirurgicales aux institutions sanitaires et éthiques, qui évaluent l’opportunité de cette expérimentation, révèle des rapports distincts à l’objectivité médicale e tà l’encadrement des pratiques hospitalières. L’émergence de la greffe du visage travaille,ensuite, les collectifs de personnes défigurées qui oscillent entre soutien au progrès médical et dénonciation de la chirurgie comme oppression. Les réactions des associations françaises et anglaises sont révélatrices de conceptions distinctes de la défiguration, et contribuent à façonner la trajectoire de la greffe du visage. La greffe du visage interroge, enfin, les conditions sociales de disponibilité des corps des défunts et les tensions à l’oeuvre dans la réception d’un don anonyme d’organes. Les patients greffés au visage sont soumis à une double contrainte qui peut-être vécue comme contradictoire : d’un côté, celle de remercier le donneur, de l’autre, celle de l’oublier pour accepter la greffe. La thèse révèle ainsi l’assemblage hétérogène, mais néanmoins cohérent, de ces niveaux d’analyse, qui est en jeu dans chaque déplacement d’une partie de corps d’une personne à une autre. Elle éclaire, en d’autres termes, ce que charrie la chair
How has the face become an organ, object of donation and transplantation? Starting from thisquestioning, this thesis invests the environment of those who have carried facial transplantprojects, and those who have debated about them, during the years 2000 and 2010 in Franceand the United Kingdom. It illuminates the social conditions according to which facialtransplantation has been made acceptable, for transplanted patients and surgical teams, organdonation coordinators and relatives of deceased donors who allow the retrieval. The enquiryinvolved an in-depth investment of the whole chain of transplantation, based on the collectionof archives (scientific, institutional, media), on conducting interviews (with surgeons, patients,organ donation and medical regulation’s actors, members of associations of disfigured people),as well as doing an ethnography of hospital services that carry out these operations (from theoperating rooms to the service meetings). By closely following these actors, the surveyilluminates the tensions that experimentation reveals in its passage.This research addresses face transplant as an object that articulates questions at the crossroadsof institutions, social movements and experiences of donation. Face transplant upsets, first ofall, the claims of the surgeons to self-regulate. The confrontation of surgical teams with healthand ethical institutions, which evaluate the appropriateness of this experiment, reveals distinctrelationships to medical objectivity and to the supervision of hospital practices. The emergenceof face transplant, then, poses a challenge to the collectives of disfigured people who oscillatebetween support for medical progress and denunciation of surgery as oppression. The reactionsof the French and English associations are indicative of distinct conceptions of disfigurement,and help to shape the trajectory of face transplant. Lastly, face transplant questions the socialconditions of the dead bodies' availability and the tensions at work in the reception of ananonymous donation of organs. Transplanted patients are subject to a double constraint that canbe experienced as contradictory: on the one hand, that of thanking the donor, on the other, thatof forgetting the donor in order to accept the transplant. The thesis thus reveals theheterogeneous – and at the same time coherent – assembly of these levels of analysis, which isat stake every time a body part is transferred from one person to another. It illuminates, in otherwords, what the flesh carries

Involving patients in medical decisions by acknowledging patients personal values and individual preferences has become an important goal of providing ethical medical care. Despite a general movement towards a model of shared decision-making, many patients do not fully meet their preferred role in practice. The decision whether or not to accept a kidney once it is offered to a patient awaiting transplant has historically been made predominantly by the transplant surgeon with little involvement from the patient. Because dialysis can provide long-term renal replacement, declining a kidney is a viable option. Patient changes over time and inherent heterogeneity of donor kidneys make this an authentic decision requiring careful analysis of costs and benefits from the patient perspective. The purpose of this study is to improve our understanding of how patients and transplant surgeons prioritize different factors when deciding whether or not to accept a kidney that has become available, in order to empower patients to become more involved in the decision-making process. Phase I: We developed a comprehensive list of factors that patients might consider important through qualitative interviews with patients, and deliberation with a transplant surgeon (SK) and a transplant nephrologists (RF). Phase II: We quantified the relative importance of each factor for patients on the transplant list and for transplant surgeons with a computerized survey using Maximum Differences Scaling. We developed relative importance scores using Heirarchical Bayes analysis, and tested for associations between patient characteristics and relative importance scores using Spearmans correlation coefficient and the Mann Whitney U test for continuous and categorical variables respectively. Of the factors evaluated, patients placed the greatest value on Kidney quality, How closely matched you are to the kidney, and How strongly your surgeon feels you should accept the kidney. Relative importance of different factors did not change based on patient demographic characteristics. Patients who are on the waiting list longer give less importance to kidney quality (standard beta estimate -0.23, p value 0.03) and more importance to How difficult it is for you to be matched to a donor (ie whether or not you are sensitized) (standard beta estimate 0.28, p value 0.01). Surgeons placed the greatest value on Kidney quality, How difficult it is for the patient to be matched to a kidney (ie whether or not the patient is sensitized), and The age of the donor. This pilot study suggests a role for standardized education tools to help empower patients to be involved in this difficult decision. Development of decision aids can be guided by the results of this project.

Thesis (M.A.)--Georgia State University, 2007.
Title from file title page. Cynthia Hoffner, committee chair; Yuki Fujioka, Holley Wilkin, committee members. Electronic text ( 81 p.) : digital, PDF file. Description based on contents viewed Nov. 8, 2007. Includes bibliographical references (p. 57-65).

Orientador: Newton Kara-Jose
Tese (doutorado) - Universidade Estadual de Campinas, Faculdade de Ciencias Medicas
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Resumo: Os objetivos deste estudo foram identificar o perfil epidemiológico dos familiares responsáveis pela autorização ou recusa à doação de córneas de seus parentes falecidos no Hospital de Clínicas da Universidade Estadual de Campinas; suas razões para autorizar ou não a doação; e razões para ser ou não doador de córneas. O estudo foi desenvolvido na Faculdade de Ciências Médicas, no Hospital de Clínicas da Universidade Estadual de Campinas - Unicamp, Campinas, São Paulo, Brasil, entre dezembro de 2005 e dezembro de 2006. O desenho adotado nesta pesquisa foi um estudo transversal do tipo analítico e descritivo, realizado através de questionário testado em estudo piloto. A amostra populacional desse estudo foi calculada baseado em teste estatístico para estudo descritivo e variável qualitativa. Foram realizadas 184 entrevistas e os resultados sugeriram que os familiares que eram solteiros, divorciados ou separados; católicos ou sem religião; que possuíam conhecimento que sua religião era a favor da doação; que possuíam atitudes altruísticas; que possuíam algum grau de conhecimento sobre doação e que obtinham informação sobre doação pela TV ou rádio, autorizaram mais a doação das córneas de seu parente falecido. As razões citadas para autorizar a doação de córneas foram: solidariedade às famílias que esperam por uma córnea; respeito ao desejo em doar do falecido; atitude altruística de ajudar ao próximo; conforto ao momento de dor que a família vivia. E as razões citadas contra a doação foram: respeito ao desejo em não doar do parente falecido; desconfiança na utilização da córnea; demora para captar a córnea e razões religiosas. O conhecimento desse perfil e dessas razões poderá levar a um melhor entendimento da recusa familiar e assim, planejar medidas mais efetivas para aumentar a doação de córneas.
Abstract: The objectives of this study was to identify the epidemiological profile of the family responsible for granting or refusing the donation of corneas of their deceased relatives in the Clinical Hospital of State University of Campinas and identify their reasons for granting or not giving, and reasons to be or not donor corneas. The study was conducted at the College of medical Sciences of Clinical Hospital of state University of Campinas, São Paulo, Brazil, between December 2005 and December 2006. The design adopted in this research study was a cross-sectional analytical and descriptive study through a questionnaire tested in a pilot study. The sample population of this study was calculated based on statistical test for a descriptive and qualitative variable. One hundred eighty four interviews were conducted and the results suggested that family members who were single, divorced or separated, Catholic or no religion, who had knowledge that their religion was in a favor donation, which had altruistic attitudes, which had some degree of knowledge about cornea donation and they obtained information about donation by TV or radio were more significant to authorize the donation of corneas of their deceased relative. Reasons cited to authorize the donation of corneas were: solidarity, the deceased wanted to donate, altruistic attitude to the next, comfort the moment of pain that the family lived. And the reasons cited against the donation were the deceased relative did not want to be a donor, do not have confidence in the use of the cornea, the delay to capture the cornea and religion reasons. Knowledge of this profile and theses reasons may lead to a better understanding of family refusal and so, plan the most effective measures to increase the donation of corneas.
Doutorado
Oftalmologia
Doutor em Ciências Médicas

The overall aim of this thesis is to show how some ideas in Aristotle’s Nicomachean Ethics can be interpreted and used as a productive way to approach a number of pressing issues in bioethics. Articles I-II introduce, and endorse, a social constructivist perspective on rights (as opposed to the more traditional natural rights idea). It is investigated if the existence of property-like rights to biological material would include the moral right to commodification and even commercialisation. Articles III-V discuss similar questions and more specifically champion the application of an Aristotelian virtue ethics perspective. The articles are preceded by an introductory essay on some of the central themes in the Nicomachean Ethics. This section also includes a very brief account of what the connection between virtue ethics and a theory of social construction, including rights, could look like. The thesis seeks to show that if read somewhat creatively many of the ideas in the Nicomachean Ethics make for a highly useful approach to modern moral problems. It should be noted, however, that this thesis in no way claims to be an exegetic, or a complete, study of the Nicomachean Ethics. Article I deals with ownership of biological material from a philosophical, as opposed to a legal, perspective. It is argued that a strand in liberal political theory that treats property relations as socially constructed bundles of rights, as developed by e.g. Felix Cohen and Tony Honoré, is well suited for discussions on ownership of biological material. Article II investigates which differences in biological material might motivate differences in treatment and ownership rights. The article draws on the social constructivist theory of ownership which was developed in Article I. Article III employs virtue ethics to explain why it is morally permissible to donate but not to sell organs such as kidneys. It is suggested that the former action will bring the agent closer to a state of human flourishing. Article IV argues that virtues like philia, justice, beneficence and generosity — traditionally all seen as other-regarding — contain strong self-regarding aspects. The central claim is that these self-regarding aspects of the other-regarding virtues are necessary components of complete virtue and thus that the fully virtuous agent has to act virtuously both in her dealings with herself and others. Article V applies the ideas that were developed in Article IV to the case of living organ donations to next of kin. It is proposed that such an act, although noble and fine, is supererogatory, rather than obligatory, as the donor is morally entitled to be partial to herself. This argument is made against the backdrop of a discussion on some Aristotelian ideas on philia and partiality.
QC 20100709

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With the great achievements of biotechnology, there has been an increase in the number of kidney transplantations with live donors in Brazil. In the past decade, several studies focused in quantifying, analysing and describing the aspects of live kidney donation. Due to its complexity, it has conflicts in psychic, social, spiritual and existential aspects. The present study aims to describe the fantastic world of donors with the choice of donating a kidney and understand the possible choices of those who have performed the transplant. Meaning to describe the life of each donor, this is a phenomenologic qualitative research with an interview with six kidney donor adults living in São Paulo. The interviews were performed by questions followed by a trigger question considering the participant s answer and following its phenomenologic flow. For data analysis and synthesis, the following steps were put into practice: description, reduction and phenomenon interpretation. The lack of a psychological work on the donors was noticed before, during and after donation. Finally, this essay reveals being a kidney donor has new challenges and confrontations to save the life of a family member, in addition to the subjective aspects in the choices and decisions of being a donor
Com o grande avanço da biotecnologia foi possível observar um crescente número de transplantes renais com doadores vivos no Brasil. Na última década, muitos estudos têm se preocupado em quantificar, analisar e descrever os aspectos do fenômeno da doação renal intervivos. Por sua complexidade, envolve conflitos nas suas dimensões psíquicas, sociais, espirituais e existenciais. Este estudo teve como objetivo descrever o que aconteceu no mundo fenomenal de pessoas doadoras com a escolha de doar um rim e apreender as possibilidades de escolhas dessas pessoas que realizaram o transplante. Com a intenção de descrever a vivência interna de cada doador, foi realizada uma pesquisa qualitativa de abordagem fenomenológica entrevistando seis participantes adultos que realizaram a doação renal na cidade de São Paulo. Foram realizadas entrevistas através da construção de perguntas seguidas à pergunta disparadora, a partir do discurso do doador participante, seguindo o seu fluxo de sentido fenomenológico. Para a análise e síntese dos dados, seguiu-se as seguintes etapas: descrição, redução e interpretação fenomenológica. Apurou-se a insuficiência do trabalho psicológico realizado com os doadores, que deve abranger as fases pré, durante e pós doação. Por fim, o presente estudo revelou que a experiência de ser um doador renal apresenta novos desafios e enfrentamentos em prol do desejo de salvar a vida de um familiar enfermo e ainda reflete aspectos subjetivos que permeiam nas escolhas e decisões de ser doador renal

The use of quality-of-life as an outcome measure provides detailed information about the effectiveness of medical treatments than morbidity or mortality rates alone. The use of quality-of-life data in the clinical setting can inform patients regarding treatment options, treatment benefits and costs. In competing health care markets, outcome measurement is regarded as important as it is concerned with the impact of health care practice and affects health policy decisions. Doessel (1978) conducted the first Australian study on the cost-effectiveness analysis of renal replacement therapies. The study was based on Klarman, Francis & Rosenthal's (1968) the study, where the output was measured in terms of the number of life years gained from kidney transplantation, and a twenty-five percent weight was allocated in an attempt to capture quality-of-life from kidney transplantation. Doessel (1978) used two sources of data: Australian data (Disney 1974) and European data (Gurland et al. 1973; Shiel et al. 1974). The study measured life years gained, and agreed with the Klarman et al. (1974) findings that transplantation is the most effective way to increase life expectancy of persons with chronic renal disease (Butler & Doessel 1989). The outputs of the alternative treatments were not reported in monetary terms; the study focused on life years gained as the output measure. Hence the importance of this current study, which includes a cost-effectiveness analysis for cadaver liver, and living kidney transplantation for end-stage liver and kidney disease patients. Calls to respect patient autonomy and to produce patient-centered outcomes have recently brought the patient’s point of view back into the center of clinical medicine (Sullivan 2003). Survival rates indicate one measure of outcome however they do not reflect patients’ perceptions of health benefit or experiences. Noting that patients’ psychosocial effect on functioning is of more concern to them than their physical Thesis Preamble iii ability, that more accurate knowledge of patients’ conditions be measured prior to transplantation (Tarter et al. 1991). Recently researchers advocated investigating transplant patients' states of health to assess the social benefit of these expensive health care services from their perspective (Joralemon & Fujinaga 1997). The current study's mixed method, bridges the gaps in treatment outcome measurements, as the mixed method applied (Creswell 1994; Sim & Sharp 1998) prospectively measured quality-oflife, determined health utility, quality-adjusted life years (QALYs) and incremental cost-effectiveness ratios (ICERs). The study reported the living donors experience of the donation process, described their needs; expressed using a new psychosocial model supporting future living kidney donor's during the donation process.

La greffe repose sur le don d’un organe qui, dans le cadre du don cadavérique, est issu d’un donateur qui n’a pas la conscience de donner. Le donneur et le receveur ne se connaitront jamais, et ce don prend le sens d’une réduction à la donation. Tout se passe comme si le donateur redonnait une chose dont il n’était pas propriétaire ; ce procès prend dès lors la forme d’un sacrifice ou redondance du don, au sens où celui qui a reçu redonne à son tour et sans retour. Il illustre également le concept d’hospitalité qui peut être mobilisé autant par le greffé, que par le soignant. Durant cet intervalle requis par la greffe, au sein de ce rituel symbolique et technique, le greffé est soumis à une réalité chaotique inconcevable et imprévisible. Ainsi, le mot peut manquer et l’écriture, par exemple, peut pallier cette carence, sous la forme d’ateliers ; expérience qui fut menée durant cette recherche et qui sera poursuivie. Sans s’opposer à la démarche des ateliers et outre l’avantage d’une mise en œuvre plus simple, le récit narratif s’est imposé pour trois raisons. - C’est une forme d’action, la plus élémentaire, la première possible après une longue période où toute action était devenue improbable. - C’est une façon de donner une cohérence au parcours subi et, même s’il s’agit d’une construction narrative, celle-ci participe à l’individuation du greffé, condition préalable pour envisager de nouvelles actions. - Enfin, ce récit peut être restitué au médecin qui a vécu l’acte de greffer, contrairement au malade. L’hypothèse est que cette hospitalité faite au récit permet d’une part, de renverser le schéma habituel – le soignant est dans la position de celui qui reçoit, non de celui qui donne –, d’autre part, de donner crédit au récit. Et, de proposer que la phase de réhabilitation, en rapport avec les actes thérapeutiques lourds, débute par ce type de récit où le malade parle et le soignant écoute, sans autre finalité, pour ce dernier, que d’accepter et de recevoir
The transplant bases of the donation of an organ which, within the framework of the deathly donation, arises from a donor who is not conscious to give. The donor and recipient will never know each other, and this donation takes the senses of a reduction in the donation. It’s as if the donor gave a thing which he didn’t own ; this process takes from then on the form of a sacrifice or a redundancy of the donation, meaning that the one who received becomes the one to give, with no return expectations. It also illustrates the concept of hospitality which can be mobilized by the transplanted and the caregiver. During this interval required by the transplant, within this symbolic and technical rite, the transplante is subjected to an inconceivable and unpredictable chaotic reality.The transplanted can be wordless, and the writing, for example, can mitigate this deficiency, in the form of workshops. Such an experience was carried out during this research and will be pursued.Without opposing the approach of workshops and besides the advantage of a simpler implementation, the narrative was imperative for three reasons :- it is the first possible form of action after a long period of inactivity.- It helps the transplanted to give a coherence to the tranplantation. Even if it is narrative construction, it participates in the individuation of the transplanted, a precondition to envisage new actions.- Finally, this narrative can be restored to the doctor who experienced the act to tranplant, contrary to the sick person. The hypothesis is that this hospitality made for the narrative allows on one hand, to reverse the ususal plan – the caregiver is in the position of the one who receives, not of the one who gives - , on the other hand, to give credit to the narrative.And, to propose that the rehabilitation phase, related to the heavy therapeutic acts, begins with this type of narrative where the sick person speaks and the caregiver listen to, without no other purpose, for the latter, than to accept and receive

La recherche doctorale étudie le rôle du droit face à la pénurie d’organes. L’objectif central consiste à dégager des pistes de réflexion de lege ferenda quant à la façon dont la science juridique peut tenter de répondre à cette problématique d’actualité et ainsi d’énoncer des propositions pour réduire le manque de greffons.Pour ce faire, il convient d’analyser le phénomène de pénurie dans son existence, ses origines et ses prolongements. En outre, un examen des règles existantes en Belgique, mais aussi dans d’autres pays et sur le plan international, et de l’impact de celles-ci sur l’insuffisance de transplants doit être réalisé, afin de mettre en évidence les options paraissant les plus appropriées. Les pays choisis pour la comparaison l’ont été pour le nombre élevé de dons qu’ils connaissent (l’Espagne et la Croatie) ou pour l’originalité et l’efficacité de leur système face la pénurie (pour l’originalité, l’Iran, qui a mis en place un système organisé par l’Etat de dons vivants rétribués, système ayant fait l’objet de plusieurs études dans les pays occidentaux ;pour l’efficacité, les États-Unis, qui ont notamment développé différents moyens pour favoriser au maximum les dons vivants).Sur cette base, des propositions inédites, destinées à appréhender de façon pertinente l’écart entre l’offre et la demande d’organes, sont formulées. Ces propositions sont valables au niveau belge mais pourraient mutatis mutandis être intéressantes pour d’autres pays, moyennant les adaptations nécessaires à la prise en compte de leurs spécificités.
The PhD research studies the role law could play in the organ shortage. The main purpose consists in finding de lege ferenda proposals so as to the way law could try dealing with this topical issue and offering ways to reduce the lack of organs.In order to do so, the phenomenon of the shortage as a whole – its existence, causes and consequences – has to be analyzed. Besides, a study of the rules applicable in Belgium, but also in other states and on the international level, as well as of their impact on the organ deficiency has to be realized, to highlight the options that seem the most appropriate. The countries were chosen for the comparison because of their high number of donations (that is the case of Spain and Croatia) or of the originality and efficiency of their system concerning the shortage (as for the originality, Iran has put in place a state-organized system of paid living donors, which has been the topic of several studies in Western countries; as for the efficiency, the United States have developed different ways to favor living donations to a maximum).On these grounds, different proposals designed to handle the gap between demand and supply of organs in a relevant way are formulated. These proposals are valid in the Belgian context but could also be interesting for other countries as long as appropriate adaptations are made to take their specificities into account.
Doctorat en Sciences juridiques
info:eu-repo/semantics/nonPublished

Лісіцина Ю. О. Порушення встановленого законом порядку трансплантації органів або тканин людини та насильницьке донорство: кримінально-правова та кримінологічна характеристика: дисертація на здобуття наукового ступеня кандидата юридичних наук за спеціальністю 12.00.08 – кримінальне право та кримінологія; кримінально-виконавче право/Лісіцина Юлія Олександрівна. – Львів: ЛьвДУВС, 2016. - 250 с.
У роботі виокремлено та проаналізовано соціальну зумовленість кримінальної відповідальності за такі діяння, розглянуто зміст та особливості складів зазначених злочинів. Досліджено особливості кримінологічної характеристики цих злочинів, а також осіб, які їх вчинили. Зауважено на двох групах показників («зовнішні» та «внутрішні» характеристики), що відображають аналізований вид злочинної поведінки як соціальну практику, у сфері незаконних трансплантацій та донорства крові. Для визначення особливостей детермінації цього виду злочинної діяльності застосовано системний підхід і вчення про системну детермінацію. Виокремлено недоліки медичного обслуговування та запровадження контролю у сфері трансплантології, наявність випадків організації відповідного «кримінального бізнесу» у медичних установах. Запропоновано обґрунтовані шляхи підвищення ефективності протидії злочинам такого виду.In the work, the social conditionality of criminal liability for such actions was distinguished and analyzed, the content and the peculiarities of the analyzed crimes components were considered. The features of criminological characteristics of such crimes were investigated, as well as the persons, who committed it. The attention was drawn to two groups of indicators (“external” and “internal” features), reflecting the analyzed type of criminal behaviour, as a social practice, in the field of illegal transplantations and blood donation. A system approach and the doctrine of system determination were applied to define the peculiarities of determining the given type of criminal behaviour. The shortcomings of medical care and organizing control in the field of transplantology were separately distinguished, as well as the cases of organizing corresponding “criminal business” in medical institutions. Reasonable ways of increasing the efficiency of combating crimes of such type were suggested.

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Financiadora de Estudos e Projetos
The organ donation and transplantation have been a much discussed topic worldwide because of the great advances that medicine has made in recent years. However, even relevant, this topic still generates controversy and discomfort because most of the population, including many health students have a insufficient knowledge about laws which govern the process of donation and transplantation in Brazil, as well as basic issues but fundamental on the subject. The aim of this study is to development a prototype of a distance learning course, so that students in the health field may have the opportunity to learn about organ donation and transplantation, since the topic is hardly offered during graduation in most of Brazilian Universities. We picked up for the creation of a online course prototype because the internet being currently too much strong to teaching and search. The Distance Education together the internet became as an effective tool in the teaching-learning students, breaking down barriers imposed by time and distance. The literature review in the area, the analysis of the politicalpedagogical projects of health courses, as well as the information available on the Internet and the knowledge of the 150 fourth graders of the Federal University of São Carlos through a structured questionnaire served as support for the creation of the prototype. The data obtained from the questionnaire were coded, organized and analyzed quantitatively using descriptive statistics by the Statistical Package for Social Sciences (SPSS ®). The results show that it is essential to approach the subject during the graduation training of future professionals capable of changing reality of the country about the process of organ donation and transplantation.
A doação e o transplante de órgãos têm sido um tema muito discutido em âmbito mundial, em virtude dos grandes avanços que a medicina fez nos últimos anos. Todavia, mesmo relevante, esse tema ainda gera polêmicas e desconfortos, uma vez que a maior parte da população, incluindo muitos estudantes da área da saúde, tem pouco conhecimento sobre as Leis que regem o processo de doação e transplante no Brasil, além de questões básicas, porém fundamentais sobre o tema. Este estudo tem como objetivo a elaboração de um protótipo de um curso a distância, a fim de que os estudantes possam ter a oportunidade de aprender sobre doação e transplante de órgãos, já que a temática não é ofertada formalmente durante a graduação na maioria das Universidades brasileiras. Optou-se pela criação de um protótipo de um curso on-line pelo fato da internet estar, atualmente, ganhando forças no ensino e pesquisa, assim, pode-se usar a Educação à distância vinculada a ela como ferramenta eficaz no ensinoaprendizagem de alunos, quebrando as barreiras impostas pelo tempo e distância. A análise da literatura na área, análise dos projetos político-pedagógicos dos cursos da saúde de uma universidade, bem como das informações disponíveis na internet e os saberes dos 150 alunos do quarto ano de graduação dos cursos da saúde da Universidade Federal de São Carlos através de um questionário estruturado serviram de respaldo para a criação do protótipo do curso. Os dados obtidos do questionário foram codificados, organizados e analisados quantitativamente por estatística descritiva através do Statistical Package for the Social Sciences (SPSS®). Os resultados mostram que é fundamental a abordagem do tema na graduação visando a formação de futuros profissionais capazes de mudar a realidade do país quanto à doação, captação e transplante de órgãos.