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dissertation (12)


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2020 (12)

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Dissertation
Contact Investigation in Multidrug-Resistant Tuberculosis: Ethical Challenges
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Year: 2020 Publisher: Leuven KU Leuven. Faculteit Geneeskunde

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Contact investigation is an evidence-based intervention of multidrug-resistant tuberculosis (MDR-TB) to protect the public health by interrupting the chain of transmission. In pursuit of contact investigation, patients’ MDR-TB status has to be disclosed to third parties (to the minimum necessary) for tracing the contacts. Nevertheless, disclosure to third parties often unintentionally leads the MDR-TB patients suffered from social discrimination and stigma. For this reason, patients are less inclined to reveal their MDR-TB status and becomes a significant issue in contact investigation. This issue certainly turns into a negative impact on the public interest. Tension between keeping MDR-TB status confidential and safeguarding the public health arises in relation to this issue. Regarding MDR-TB management, patient compliance with treatment and contact investigation are equally important. Patients might fail to comply with anti-TB therapy and be reluctant to seek healthcare due to disclosure concern. In order to have treatment adherence, MDR-TB patients should not live through social discrimination and stigma arising from disclosure and TB team has a duty to support them as a mean of reciprocity. However, implementation of contact investigation as a public health policy can still be challenging even with promising reciprocal support to the patients because MDR-TB patients are living in different contexts and situations. There can be no straight forward settlement but an appropriate justification for each distinct context is needed to strike a balance between individual confidentiality and public interest.

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Dissertation
The Global Kidney Exchange. Saviour or Exploiter of end-stage renal failure patients in low- and middle-income countries?
Authors: --- ---
Year: 2020 Publisher: Leuven KU Leuven. Faculteit Geneeskunde

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The Global Kidney Exchange (GKE) program, introduced by Rees et al. (2017), has been described as an innovative method to address the global shortage of kidneys for the purpose of transplantation. However, the concept of the GKE has evoked controversy and various international bodies have accused it to be a form of low- and middle-income country (LMIC) exploitation. Using Julian Koplin’s framework of exploitation, we consider three different conceptualisations of wrongful advantage taking in the unique setting formed by the GKE. The analysis contributes to a better understanding of the controversy and gives insight into how to deal with background conditions that influence the fairness of such a global social cooperation.

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Dissertation
Species extinction: Combatting malaria with genetically engineered Anopheles mosquitoes
Authors: --- ---
Year: 2020 Publisher: Leuven KU Leuven. Faculteit Geneeskunde

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Approximately a quarter billion people around the world suffer from malaria each year. Most cases are located in Sub-Saharan Africa where Anopheles gambiae mosquitoes are the principal vectors of the disease. With the use of CRISPR-based gene drives, the population of mosquitoes can be modified, eventually causing their extinction. In this paper, the various ethical concerns that accompany these genetically modified mosquitoes (GMMs) will be discussed. First, the value of mosquito species is evaluated. Acceptance of the eradication of a species depends on the moral status of the organism. Since mosquitoes are generally attributed a low moral status, using GMMs to combat malaria should not be abandoned based on some moral value of A. gambiae. Possible environmental impacts due to the eradication of A. gambiae or the use of gene drives will also be explored. Environmental impact studies have to be performed to obtain an accurate account of these possible effects. The risks from the purposeful extinction of A. gambiae should not overtake the benefits of eradicating malaria and risk assessments should be used to determine acceptable risks. The eventual release of the GMMs will depend on transparency, community involvement and cooperation between different nations. This study aims to provide a first thorough view on the ethical complications of genetically engineered mosquitoes for the sake of public health. Ethical insights into the practical implementation of this technology will contribute to an informed discussion.

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Dissertation
The Role of the Right to an Open Future in Reporting Prenatal Findings
Authors: --- ---
Year: 2020 Publisher: Leuven KU Leuven. Faculteit Geneeskunde

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The introduction of genome-wide prenatal screening has provoked several ethical issues. One group of ethical concerns pertains to the vast amount of information that goes beyond clinical relevance these screening tests can generate. This paper focusses on the subsequent tension of the widening scope of prenatal screening and the question what information expectant parents ought to have and on what basis. One such basis that has been widely cited limiting parental freedoms is the open future principle. This is based on Joel Feinberg’s (1980; 1992) original formulation of the child’s right to an open future, which holds that adult autonomy rights children cannot yet exercise should nonetheless be protected until they are old enough to decide certain things for themselves. Its purpose is to protect the future autonomy of the future adult. In the context of genetic testing on minors, for instance, the future adult’s right not to know and right to genetic privacy can be protected on the basis of the child’s right to an open future. When possible, genetic testing on minors is postponed until they can make autonomous and well-informed decisions. Several authors have extended this logic from child to foetus by applying the right to the context of prenatal screening—and in particular to genome-wide testing like cell-free foetal DNA testing (cffDNA) as is done with non-invasive prenatal testing (NIPT). However, the right to an open future was not anticipated to apply to a non-legal entity such as the foetus. Its application is further complicated by its incompatibility with reproductive autonomy, an immanent value in this context. This paper will further explore the application of the child’s right to an open future in the prenatal context, in particular with reference to the question of what expectant parents ought to know prenatally.

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Dissertation
Analysis of the ethical justifications for the 14-day-rule of human embryo culture
Authors: --- ---
Year: 2020 Publisher: Leuven KU Leuven. Faculteit Geneeskunde

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The recent development of a groundbreaking culture system that allows human embryos to develop in vitro for longer than ever before has revived the debate on how long embryos should be allowed to develop outside of the mother’s womb. By mimicking implantation in a dish, human embryos attached and developed until 14 days, the legal limit recommended in 1984 by the Warnock committee and that has been translated into law in many countries, including Belgium. Born at the time of the first successful attempts of in vitro fertilization and in the context of an emerging debate on the status of the human embryo in vitro, the 14-day limit was chosen as a solution of compromise on three main grounds: first, no functional nervous system has developed, precluding fears of the embryo experiencing pain or having conscience; second, it corresponds to the end of implantation; and third, it precedes primitive streak formation which indicates an individual is not present. Amongst international calls to extend this period to 21 or even 28 days, here we analyze whether these three arguments are still pivotal to uphold the limit at 14 days. We argue that although all three arguments are still valid, a nervous system is not functional for longer than 14 days and would not hinder extending the limit even to 28 days; implantation is allowed to occur in the present regulatory system and thus does not constitute an argument to uphold or extend the rule; finally, a less stringent interpretation of the biological criteria for individuality could allow to extend the limit to 21 days. Overall, we stress that grounding normative conclusions on biological facts is a matter of choice and must be carried out with extreme caution in a perduring context of irreconcilable disagreements on the status of the human embryo.

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Dissertation
A media analysis on polygenic risk scores in preimplantation genetic testing
Authors: --- ---
Year: 2020 Publisher: Leuven KU Leuven. Faculteit Geneeskunde

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Recently, new companies started offering preimplantation genetic tests (PGT) using polygenic risk scores. In 2018, one of these companies created a test to identify embryos at risk of intellectual disability. This raises questions whether it is appropriate to use polygenic risk scores to determine which embryo to select; if so, for which diseases or traits; and who should be able to make such decisions. We consider it is important to analyse how information about the use of polygenic risk scores is communicated to the public. In this qualitative media analysis, we discuss different themes communicated in news articles about the introduction of polygenic risk scores in PGT. We searched for news articles in Nexis Uni and Google News and used “Genomic Prediction”, one of these new companies, as a search term. We yielded 47 articles in English, 8 articles in French, 2 articles in Dutch and 2 articles in German. We coded these articles with attention to ethical information. From the coding scheme, we extracted seven different themes with relevance to ethics: A slippery slope to designer babies (Theme 1), Wellbeing of the child (Theme 2), Wellbeing of the parents (Theme 3), Impact on society (Theme 4), Deliberate choice (Theme 5), Affecting the spontaneous course of events (Theme 6), and We’re not ready for it (Theme 7). Several of these themes are discussed in academic literature and could be extrapolated to a broader debate about genetic techniques in human reproduction. The public as well as the academic debate shows that specific recommendations and guidelines concerning polygenic risk scores in embryos are needed. This media analysis discloses important themes in the public debate to take into account when creating future recommendations.

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Dissertation
Interesse, attitudes en voorkeuren van de algemene bevolking met betrekking tot de implementatie van een uitgebreide genetische drag erschapsscreeningstest in België

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Background: Carrier screening is the genetic testing of asymptomatic individuals or couples to identify those who are at increased risk of conceiving a child affected by a monogenic autosomal of X-linked recessive disorder. Technological advances have made it possible to screen for hundreds of recessive disorders in a single test. This panel-based screening is called expanded carrier screening (ECS). Since October 2019, a Belgian Genetic Expanded Carrier Screening test (BeGECS) is available to all couples planning a pregnancy in the form of a pilot study. To ensure a responsible implementation of ECS in Belgium, it is necessary to gain insight into the societal views regarding ECS. Objective: The aim of this study was to explore the interest, attitudes and preferences of the broad general population in Belgium regarding ECS. Materials and methods: Between October 11 and December 9, 2019, a written, paper survey was administered to patients in the waiting room of six different general practices in the provinces of Antwerp and Flemish Brabant, Belgium. Prior to completing the survey, written background information was provided about the concept of carrier screening, the risk of being a carrier couple and the associated risk of conceiving an affected child, and the reproductive options available for carrier couples. Results: The survey was completed by 707 participants with a mean age of 45.6 years old. Most participants (59.3%) had not heard of carrier screening prior to participating in this study. Moreover, 52.3% of our respondents perceived their risk of being a carrier as (very) low. In total, 57.7% of the participants indicated intention to participate in ECS. The great majority thought it (rather) acceptable to test both couples with a desire to have children (85.5%), individuals (81.2%) and pregnant women (80.6%) for their carrier status. However, a considerable part of our respondents were concerned that ECS will lead to a great pressure to get tested (56.7%), to a greater anxiety (45.6%) and to unrealistic expectations of having a healthy child (37.4%) among couples planning a pregnancy. The gynecologist (72.5%), the general practitioner (70.0%) and the center for human genetics (65.4%) were by far the preferred providers of ECS. Couple-based test results were preferred by more respondents (46.7%) than individual test results (31.3%). Most participants (64.9%) were willing to pay out-of-pocket for ECS. Of those, 53.0% were willing to pay a maximum of 150 euros and only 3.9% were willing to pay more than 600 euros. Conclusion: This study indicates a considerable interest and an overall positive attitude among individuals of the general Belgian population regarding ECS. However, the study findings also emphasize the necessity of informing and educating the general population about ECS, and providing qualitative pre- and post-test counseling to prospective parents to address potential misconceptions and concerns. The results of this study can be used in the ongoing debate about the acceptability and desirability of ECS and support the responsible implementation of ECS in the Belgian healthcare system.

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Dissertation
Standpunt van Vlaamse middelbare scholieren ten opzichte van orgaantransplantatie, xenotransplantatie en chimera's
Authors: --- --- ---
Year: 2020 Publisher: Leuven KU Leuven. Faculteit Geneeskunde

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Achtergrond: Xenotransplantatie en transplantatie met organen van mens-dierlijke chimera’s zijn twee mogelijke oplossingen voor het tekort aan transplantatie organen. Deze technieken staan nog niet op punt en kunnen op weerstand stuiten bij de bevolking. Het doel van deze studie was het achterhalen van het standpunt van Vlaamse scholieren ten opzichte van deze technieken. Methoden: Leerlingen uit West-Vlaamse middelbare scholen werden gevraagd een anonieme vragenlijst in te vullen. Hun standpunt werd nagegaan aan de hand van hypothetische casussen en stellingen met betrekking tot deze technieken. Resultaten: Van de 741 enquêtes werden er 709 geïncludeerd voor verdere analyse. Indien vergelijkbare resultaten met humane orgaantransplantatie zou 36,1% een dierlijk orgaan accepteren, 13,3% weigeren en 50,4% twijfelen. Een negatief standpunt was geassocieerd met het volgen van een ASO opleiding (p<0,001), moslim zijn (p=0,013) en geen voorkennis hebben (p<0,001). Indien meer risico’s en slechtere resultaten zou slechts 12,8% nog een dierlijk orgaan accepteren en zou 31,2% weigeren. Een orgaan van een mens-dierlijke chimera zou, indien vergelijkbare resultaten, door 38.6% geaccepteerd worden; 19,2% zou weigeren en 41,9% zou twijfelen. Een negatieve attitude was geassocieerd met vrouwelijk geslacht (p=0,003), een BSO opleiding (p<0,001), niet-gelovig zijn (p=0,002), moslim zijn (p=0,008) en geen voorkennis hebben (p<0,001). Indien slechtere resultaten en meer risico’s zou slechts 11,4% nog een chimera orgaan accepteren en zou 36,2% weigeren. Conclusie: Vlaamse middelbare scholieren waren slechts in mindere mate voorstander van xenotransplantatie en transplantatie met organen van mens-dierlijke chimera’s.

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Dissertation
Attitudes and views of nurses and physicians on withdrawal of enteral tube feeding in terminally ill patients: A systematic review
Authors: --- --- ---
Year: 2020 Publisher: Leuven KU Leuven. Faculteit Geneeskunde

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Background: End of life decisions has always been a topic of controversy between health care professionals from ethical aspects to the personal attitudes of the care providers towards making the decision of withdrawal of life support systems, particularly tube feeding. Objective: The aim of this systematic review was to identify questionnaires that investigated the views and attitudes of health care providers on withdrawal of enteral tube feeding in terminally ill patients. Methods: A search of three online databases (PubMed, Web of Science, CINAHL) using keywords relating to the withdrawal of nutrition in terminally ill patients. Abstracts for articles that met the inclusion criteria were fully reviewed. Results: It was found that physicians’ acceptance of withdrawal of enteral tube feeding is higher than the acceptance of nurses. This difference was regarded to the difference of the nature of roles between the two. Where physicians strictly diagnose and treat, nurses ensure that the patients’ needs are met of which feeding is a major part of. Conclusion: Where physicians had their views, nurses had opposing ones. More quantitative studies should be done to conduct future policies that helps ease decision making regarding this matter.

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Dissertation
Knowledge regarding population-based preconception expanded carrier screening amongst potential users in the Belgian population

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Background: Expanded carrier screening (ECS) can inform couples about their carrier status for inherited genetic disorders. Hereby, they can make informed decisions about their reproductive plans and thus increase the reproductive autonomy. Since October 2019, ECS is available for couples with a child wish in Belgium. At present, little is known about the current genetic knowledge of ECS in the target group, however this is important to ensure a responsible implementation. Aim: This study investigated knowledge regarding ECS amongst reproductive aged men and women in the Belgian population. This study examined how the knowledge level can influence the potential interest, participation, attitudes and preferences about ECS. Methods: A quantitative prospective study was conducted using convenience sampling. Participants were recruited through five public pharmacies in Flanders, where patients were verbally invited to participate. Results: A high genetic knowledge score was achieved by 55.2% of participants. On average, a knowledge question was answered correctly by 70% of the participants with a range from 33.9% (question 11) till 88.3% (question 7). Being a woman, a higher education level, already having kids and having a child wish were found to be significant for a high genetic knowledge. Improving genetic knowledge can have an impact on better understanding the carrier risk and led to a higher acceptability for an ECS test. Conclusion: Educating the public about ECS is important. Likewise, people will be able to form an informed opinion about ECS and a thoughtful consideration of a possible participation in it.

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