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- Johnsson, Linus, 1978-
(författare)
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Trust in Biobank Research : Meaning and Moral Significance
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- What role should trust have in biobank research? Is it a scarce resource to be cultivated, or does its moral significance lie elsewhere? How does it relate to the researcher’s individual responsibility?In this thesis I draw four general conclusions. First, trust is still very much present in at least some biobanking settings, notably in Sweden, but possibly also internationally. Second, a morally relevant conception of trust entails that to be trustworthy, researchers must consider the normative expectations that people have of them, and renegotiate expectations that are mistaken. Third, this conception differs from “public trust” assessed through surveys. The main use of the latter is to legitimate policy, not to identify moral duties. Fourth, in spite of ethics review, guidelines and informed consent procedures, ethical issues will always arise during the course of a research project. Researchers can therefore never avoid their individual moral responsibility. Ensuring that one is adequately trusted is one step towards conducting morally acceptable research.Study I indicates that few Swedes refuse storage of samples in healthcare-associated biobanks and their use in research. Study II suggests that people are somewhat more willing to donate samples than surveys indicate, especially when approached face-to-face by health care personnel. Relationships of trust might thus be important in people’s decision-making. Study III investigates trust as a moral concept. The trustee is often in a unique position to determine what the other’s trust amounts to. When it is mistaken, the trustee has an obligation to counteract it, compensate for it, or renegotiate the expectations that cannot be met. In Study IV, I critique the feasibility of guaranteeing the trustworthiness of the research apparatus through formal measures such as ethics review and guidelines. Not only are there limitations of such measures to consider. They also risk blinding researchers to ethical issues that are not covered by the rules, fostering moral complacency, and alienating researchers to ethics.
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| 2. |
- Masterton, Malin, 1979-
(författare)
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Duties to Past Persons : Moral Standing and Posthumous Interests of Old Human Remains
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Genetic research has increasing power to analyse old biological remains. Biological traces of well-known historical persons can reveal personal information. The aim of this thesis is to investigate ethical concerns for the dead, within the biological, historical and archaeological sciences. In philosophy there is a long-running discussion on whether or not the dead can be wronged. The good name is proposed as a candidate of a posthumous interest. It is first of all argued that slandering per se can be wrong regardless of posthumous wronging of the dead. Secondly, the concept of change is investigated. It is argued that the property of having a reputation is a relational property. Hence a change in public opinion of a dead person, is also a change in the dead person’s reputation. The third contribution of this thesis is a constructive proposal for how a posthumous identity could be understood using narrative theory. Understanding identity through the life-story opens up the possibility of a gradual loss of identity after death, rather than absolute loss at the moment of death. Fragments of a person‘s narrative identity can persist in other peoples’ narratives, and for some historical persons, their narratives can be found long after their death. Finally, the implications of a remaining narrative identity for the dead are investigated in the area of archaeology and museumology. In the past 30 years, there has been increasing critique about present and past discriminatory handling of old human remains by archaeologists, in museums and in other institutions. Increasing numbers of requests have been made for repatriation or reburial of old human remains. Following an analysis of three current ethical guidelines in handling old human remains, changes to these guidelines are proposed based on a narrative method to a hypothetical claim of reburial.
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| 3. |
- Atry, Ashkan
(författare)
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Transforming the Doping Culture : Whose responsibility, what responsibility?
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The doping culture represents an issue for sport and for society. Normative debates on doping have been mainly concerned with questions of the justifiability of doping. The practice of assigning responsibility for doping behaviour has chiefly been individual-based, focusing mainly on the individual athlete’s doping behaviour. The overarching aim of this thesis is to investigate the relevance and the importance of the ideas of responsibility in relation to ethical debates on doping. The more specific aim is to examine the possibility of broadening the scope of responsibility beyond the individual athlete, and to sketch a theoretical framework within which this expansion could be accommodated. In the first study, it is argued that bioethicists have a moral/professional responsibility to start out from a realistic and up-to-date view of genetics in ethical debates on gene doping, and that good bioethics requires good empirics. In study 2, the role played by affective processes in influencing athletes’ attitudes towards doping behaviour is investigated, both on an individual and on a collective level. It is concluded that an exclusive focus on individual-level rule violation and sanctions may entail overlooking the greater social picture and would prove to be ineffective in the long term. In study 3, the common doping-is-cheating arguments are examined and it is argued that they fail to capture vital features of people’s moral responses to doping behaviour. An alternative account of cheating in sport is presented in terms of failure to manifest good will and respect. It is concluded that putting cheating in the broader context of human interpersonal relationships makes evident the need to broaden the scope of moral responsibility and agency beyond the individual athlete. In study 4, the particular case of assigning responsibility for doping to sports physicians is used to examine the current individual-based approach to responsibility. This approach underestimates the scope of the responsibility by leaving out a range of other actors from the discourse of responsibility. The central conclusion of the thesis is that transforming the current doping culture requires broadening the scope of responsibility to include individuals and groups of individuals other than the athletes themselves.
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