The professional and institutional responsibility for handling genetic knowledge is well discussed; less attention has been paid to how lay people and particularly people who are affected by genetic diseases perceive and frame such responsibilities. In this exploratory study we qualitatively examine the attitudes of lay people, patients and relatives of patients in Germany and Israel towards genetic testing. These attitudes are further examined in the national context of Germany and Israel, which represent opposite regulatory approaches and bioethical debates concerning (...) genetic testing. Three major themes of responsibility emerged from the inter-group and cross-cultural comparison: self-responsibility, responsibility for kin, and responsibility of society towards its members. National contrast was apparent in the moral reasoning of lay respondents concerning, for example, the right not to know versus the duty to know (self-responsibility) and the moral conflict concerning informing kin versus the moral duty to inform (responsibility for kin). Attitudes of respondents affected by genetic diseases were, however, rather similar in both countries. We conclude by discussing how moral discourses of responsibility are embedded within cultural (national, religious) as well as phenomenological (being affected) narratives, and the role of public engagement in bioethical discourse. (shrink)

Part I of the dissertation examines the cognitive aspects of autonomy. The central question concerns what kind of cognitive capacity autonomy is. It will be argued that the concept of autonomy is best understood in terms of a metacognitive capacity of the individual. It is argued that metacognition has two components: procedural reflexivity and metarepresentation. Metarepresentation in turn can be divided into inferential reflexivity and other-attributiveness. These two components are essential for autonomy. Particular emphasis is put on procedural reflexivity. Further, (...) since the essential function of metacognition is control, it is argued that the concept of autonomy, understood as a metacognitive capacity, can be interpreted in terms of control. Issues arising from empirical data from neuroscience on functional, as well as impaired, metacognition, and on undermined autonomy, are dealt with. It is argued that autonomy cannot be determined with respect to subjective conditions. Neurological impairments, like Anton’s Syndrome, dementia, and thought insertion in schizophrenia, are put forward in support of this claim. To determine autonomy we require external conditions. In order to determine whether an individual is autonomous, both the metacognitive status of the individual and the external setting must be considered, since they are in interplay and consequently influence each other. In Part II, the analysis put forward in Part I is applied to Swedish healthcare. It is argued that the distinction between autonomy as a right and as a capacity must be explicit in order to understand what autonomy means and to deal with it effectively in healthcare practice. A discussion about whether or not the patient’s right to autonomy sometimes tends to be over-emphasized in healthcare is put forward. Special emphasis is placed on psychitaric issues such as deinstitutionalization and participation. Following the closure of the mental hospitals, deinstitutionalization and community-based care have become central topics in psychiatry. At the same time, the implementation of such care can be demanding for patients suffering from a persistent mental disorder. In part II it is also suggested that the metacognitive account of the concept of autonomy might help clarify the criteria governing coercive care. Finally, some suggestions concerning developments and improvements in Swedish healthcare, especially in psychiatry, where the concept of autonomy is important but problematic, are put forward. (shrink)