ABSTRACT
The objective of this article is to present various views from different groups of citizens on the topic of whole genome sequencing (WGS). Sixteen focus groups were carried out in Italy and Austria which aimed at reflecting on the question of how to ensure that the implementation of WGS into the clinic is relevant and responsive to the needs of all members of society. In the qualitative analysis of the focus groups, three key themes (knowing, relationships and trust) were investigated. Although the majority of the participants favoured a person-centred care approach, we also found more radical perspectives in the relationship theme. This includes a self-centred orientation in which health care institutions should be prepared to integrate self-interpretation efforts of citizens and develop strategies to deal with them. Different attitudes towards getting to know genetic information (knowing) and varied approaches to decision-making for or against the use of WGS were observed. Personal capacities, in particular those to handle medical information, were emphasized as key factors. This means that it is important not to connect the desire not to know with a rejection of the technology per se but rather to support information and consultancy processes that effectively involve citizens. Concerning the third theme, we have underlined the important role of mistrust in addition to trust because it mostly points to areas or conditions considered problematic. Thus, mistrust is also a way to articulate critique, for example, of the profit-making with patient data, that has to be taken seriously by governance.
ABSTRACT
Genetic counseling is gaining in importance with the increasing application of genetic testing for diagnosis and clinical treatment. Genetic counseling often raises ethical and professional challenges and prior research has categorized them into 16 domains. The purpose of this study was to analyze the situation in Austria on the basis of these challenges and discuss it in the national and international context. While in some countries there is a special profession for genetic counseling, in Austria it is provided by medical geneticists or other physicians in the context of their specialization. Psychosocial professionals might be consulted or brought in if necessary. Results from 95 survey respondents (including physicians and psychosocial professionals) revealed a greater interest in the topic of genetic counseling by medical specialists other than medical geneticists. The most frequently encountered challenges among physicians were informed consent, organizational constraints, withholding information, and attaining/maintaining proficiency. The psychosocial professionals experienced maintaining proficiency and organizational constraints as the prevalent challenges. Additional findings and practice implications are presented.
Subject(s)
Genetic Counseling , Adult , Austria , Ethics , Female , Humans , Male , Middle Aged , Professional CompetenceABSTRACT
Although still a side issue in the German-language media, attention towards synthetic biology has risen clearly during the last years, in line with the first applications being presented. This paper presents findings from a content analysis of synthetic biology coverage in German-language media over the years 2004-2009. In the media, synthetic biology is not clearly separated from gene technology. News value is attributed to established categories such as persons and events. Many metaphors and analogies used in describing gene technology can also be found in the coverage of synthetic biology; however, engineering metaphors are more prominent. In addition, playfulness constitutes an aspect rarely found in genetic engineering coverage. Overall, the picture emerging is ambivalent, which leaves prospects for the further development of public debate ambiguous.
