What Do You Know About Genetics?

Consanguineous marriage is a major risk factor for autosomal recessive diseases (ARS), both in terms of morbidity and long-term mortality. Due to significant immigration to Sweden from countries where cousin marriage is common, the prevalence of ARS is expected to increase in the coming years. This increase will have substantial costs, both economically for society and in terms of human suffering for individuals. To address this issue, we need to understand people's experiences and knowledge about these genetic risks.

This pilot project, which is part of a larger project focusing on ARS, aims to gather insights from both young adults and healthcare professionals. In this pilot study, data will be collected via a digital survey directed at young adults (18-30 years old) and healthcare professionals.

The surveys include questions about individual knowledge and experiences regarding cousin marriage and ARS.

The results from the pilot study will provide an overview of the perspectives of young adults and healthcare professionals on cousin marriage and ARS.

Insights from Young Adults and Healthcare Professionals

The study aims to explore:

1) What do young adults know about the connection between cultural traditions, cousin marriage, and genetic disorders, as well as how common these marriages are in their families?

2) What do healthcare professionals know about the genetic risks of cousin marriage and how do they discuss these risks with their patients?

The data collection consists of a quantitative survey on knowledge and experiences of cousin marriage and ARS, both among young adults (18-30 years) and healthcare professionals.

The collected data includes demographic information such as gender, age, ethnic background, etc., as well as rankings of various statements related to aspects of cousin marriage and ARS, plus a small number of open-ended questions that allow for free-text responses.

The results from the pilot study will provide an initial overview of the perspectives of young adults and healthcare professionals on cousin marriage and ARS, and will give us feedback to potentially revise the survey for the larger research project.