Paper short abstract:

The main aim of this study is to contribute new knowledge on genetic counselling and on how genetic information and knowledge is understood and handled among Norwegian Pakistanis.

Paper long abstract:

Keywords: Genetic counselling (general and prenatal), inherited disorders/diseases, Pakistanis, kinship, consanguinity.

This presentation draws from an anthropological study of genetic counselling (genetic risk information) and knowledge about genetic risks among the Pakistani population in Norway. Most couples who receive genetic counselling already have one or more children with genetic disorders. National and international epidemiological research shows that first cousin marriages increase the risk of having children with recessively inherited genetic disorders, and the risk of infant mortality and morbidity, and the Pakistanis have long traditions of marrying inside the extended family group both in Pakistan and Norway. The total Pakistani population in Norway is about 28,000 (first and second generation) and it is thus the largest non-Western immigrant group.

Firstly, this presentation explores families' opportunities to get access to genetic information, their beliefs and understanding, and the challenges and dilemmas the information about risk may give.

Secondly, the presentation focuses on the different ways Pakistanis in Norway respond to and deal with the genetic knowledge; in other words, whether this knowledge has any impact or not on their lives.

The methods used are anthropological fieldwork with observation in clinical meetings, interviews with both the clinicians and the couples, a follow-up of the couples and their families in their decision-making processes, study of medical documents and interviews with Pakistanis with different backgrounds (engaged in politics, organisations, religious affairs, health etc.).

The main aim is to contribute with new knowledge about genetic counselling and how the genetic information and knowledge is understood and handled among the Norwegian Pakistanis. The main study is funded by the Research Council of Norway for three years from 2005.The Directorate of Health and Social Welfare and the Eastern Norway Regional Health Authority gave grants for a short period in 2004.