Michael Burgess – Theme Development Workshop – 2016
Michael Burgess – Exploratory Workshops – 2000
New genetic knowledge and techniques are reshaping the ways in which we understand health and illness as well as perceive our biological and social relatedness to others. For instance, the current emphasis on genes as causes of disease raises new questions about the relevance of knowing our medical family history or learning, through genetic testing, which diseases we are likely to succumb to in adulthood and old age. In this sense, genetic information is unlike most other types of diagnostic information- it is about the future and it is familial rather than individual in orientation. What are the most salient issues for individuals and families at risk for hereditary disease and how can their experiences best inform research and theory?
The proposed Exploratory Workshop will bring UBC researchers together with distinguished external experts to discuss new opportunities for collaborative research on the social and moral dimensions of hereditary risk and genetic testing. Although there is considerable ethical discussion about genetics and clinical practice or social policy, the Workshop emphasizes the implications hereditary disease within the context of family and community. The approach taken is therefore novel in that the aim is to create a framework for comparative analysis of people's everyday experiences of hereditary risk. Further, the workshop emphasizes the development of appropriate methods and ethical guidelines for ethnographic research in this area.
Building on findings from current studies on the everyday experiences associated with Huntington Disease, Autosomal Dominant Polycystic Kidney Disease and familial breast/ovarian cancer, Burgess and Cox are currently developing a framework for ethnographic research on the experience of hereditary risk and genetic testing across a range of adult onset diseases. The framework is a flexible matrix which lays the groundwork for a coherent program of comparative research. This framework will be a focus for the Workshop and will be central to the development of a Major Thematic Grant application.