| 1. |
- Jaarsma, Pier
(author)
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Reflections on Autism : Ethical Perspectives on Autism Spectrum Disorder in Health Care and Education
- 2014
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Doctoral thesis (other academic/artistic)abstract
- In the four papers presented in this dissertation I analyze and discuss various value statements and moral stances, which I regard as unjustifiably harmful for persons with Autism and obstacles for the creation of an Autism-friendly society. In the papers I try to show that the positions underpinning the Autism-phobic moral stances are not warranted and cannot be defended in a good way. In doing so, I hope to transform the harmful moral intuitions underlying these positions into autism-friendly ones. The first paper investigates the Neurodiversity claim that ‘Autism is a natural variation’. The claim is interpreted and investigated and an argument is given that, contrary to Low-Functioning Autism, High-Functioning Autism can indeed be seen as a natural variation, without necessarily being seen as a disability. The second paper focuses on the problem for persons with Autism to adapt to prosocial lying, which is saying something not true but socially acceptable in a situation. By comparing a Kantian approach and a care ethics approach, the paper ends up recommending teaching persons with Autism to lie in a rule based and empathic way. The third paper deals with the morality of embryo selection in IVF. Based on a widely shared intuition of natural capabilities, arguments are given that it is morally legitimate to choose an Autistic embryo instead of a ‘normal’ one, contrary to arguments given by proponents of ‘every child should have the best chance of the best life’. The fourth paper deals with moral education. An argument is given that due to problems with cognitive empathy children with Autism should be taught pro-social behavior in a rule based way.
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| 2. |
- Malmqvist, Erik, 1980-
(author)
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Good Parents, Better Babies : An Argument about Reproductive Technologies, Enhancement and Ethics
- 2008
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Doctoral thesis (other academic/artistic)abstract
- This study is a contribution to the bioethical debate about new and possibly emerging reproductive technologies. Its point of departure is the intuition, which many people seem to share, that using such technologies to select non-disease traits – like sex and emotional stability - in yet unborn children is morally problematic, at least more so than using the technologies to avoid giving birth to children with severe genetic diseases, or attempting to shape the non-disease traits of already existing children by environmental means, like education. The study employs philosophical analysis for the purpose of making this intuition intelligible and judging whether it is justified.Different ways in which the moral problems posed by reproductive technologies are often framed in bioethical debates are criticised as inadequate for this task. In particular, it is argued that the intuition cannot fully be made sense of in terms of harm to the children that such technologies help create.The study attempts to elaborate an alternative to that broadly consequentialist approach, by drawing on Martin Heidegger’s philosophy of technology, Hans Jonas’s ethics, and Aristotle’s practical philosophy, as it has been received and developed in the hermeneutical tradition. It is suggested that reproductive choices, unlike decisions for already born children, are characterised by a peculiar one-sidedness: the future child appears to the parents as something wholly theirs to decide about, not as a concrete other with whom they must interact in a responsive and attuned way. This is problematic because it means that such choices cannot call upon the particularised moral understanding only gained in interpersonal encounters. In particular, it makes them easily shaped by various tendencies, to which parents are always susceptible, to relate to children in instrumentalising ways, and at risk of reinforcing such tendencies. However, this does not mean that all uses of reproductive technologies are equally troubling. When selecting against severe disease the parents can rely on a widely shared illness experience to escape the dangers that one-sidedness involves. It is concluded that the intuition under discussion, thus explicated and in some ways qualified, makes sense morally.
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| 3. |
- Omar, Faisal
(author)
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Just Waiting : Ethical Challenges in Priority Setting Posed by Organ Scarcity in Kidney Transplantation
- 2011
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Doctoral thesis (other academic/artistic)abstract
- Over the last few decades kidney transplantation has transformed from an experimental treatment to the treatment of choice for end-stage renal disease. Unfortunately, however, the established organ donation models in many countries, relying chiefly on altruism, fail to motivate a sufficient number of donors. As a consequence, many lives which could be saved are lost, and others which can be improved are left to deteriorate.Dealing with the challenge of scarcity in kidney transplantation requires a dual approach. In the immediate term, we must ensure the fair distribution of kidney transplantation as a scarce medical resource. In the long term, we must find a policy level solution to mitigate the root issue of scarcity. The policy approach promoted in this thesis is the introduction of incentive based organ donation. Fair resource allocation, and incentive based donation are two themes which raise interesting normative questions, and ethical challenges. Each theme corresponds to two paperswhich form the basis for the thesis.Papers I &II, evaluate fairness in the priority setting processes underpinning access to kidney transplantation; this is done both within Sweden's four transplant centers and the Toronto General Hospital in Canada. The criteria, values, and procedures used in clinical decision-making are analyzed to identify barriers to fairness and how such barriers can be removed.Papers III and IV, propose incentive based living kidney donation and incentive based deceased donation, respectively, as policy solutions to the organ scarcity. The most frequently raised ethical objections against incentive based models are discussed in a bid to demonstrate the moral permissibility of incentive based organ donation.The discussion about fairness, and incentive based models, highlights that the ethical challenges raised by kidney scarcity are inherently difficult. While we may not find infallible solutions we certainly can work towards better solutions. We can create clinical priority setting processes, that while not perfect, move us closer towards increased fairness by removing clear obstacles to just distribution. We can create organ donation policies while not free of ethical challenges; do not shy away from all risk, or from asking the difficult questions.
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| 4. |
- Johansson, Anders, 1972-
(author)
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Biopolitics and Reflexivity : A Study of GMO Policymaking in the European Union
- 2009
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Doctoral thesis (other academic/artistic)abstract
- The political discourse that has emerged as a consequence of establishing a European regulatory framework for GMOs has not been without problems. This dissertation addresses the political and regulatory challenges created by the development and use of genetically modified organisms (GMOs) in the EU. The underlying hypothesis in the dissertation is that the emergence of a European policy in the field of GMOs has appeared through new reflexive forms of governance. The aim of this research is to understand how these reflexive forms of regulation have emerged and operate within the EU, with a particular focus on the two GMO directives 90/220/EEC and 2001/18/EC. However, the study scrutinises the regulatory regimes from the 1970s onwards by investigating how the regulatory framework regarding GMOs has been developed and implemented in the EU. This is done through an analysis of the notion of ‘risk’ and the ‘precautionary principle’ since these concepts have been at the forefront of the GMO regulation debate. The empirical approach focuses on how the European Commission, the European Parliament and the European Council as well as other actors and institutions articulate ambivalence, interpretations and uncertainties in the decision-making processes regarding regulative measures for GMOs, with an accent on risk and the precautionary principle. The main empirical material has been documents concerning the inter-institutional process involved in the regulatory process of making the two directives. The analysis indicates that during the process of implementing GMO regulations, new steering strategies have appeared within the EU’s decision-making institutions when the objective of the regulation has taken centre stage in political and scientific controversies.
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