Send message to Authors

Paper short abstract

We examine how people with a rare and progressive genetic condition navigate the moral and existential aspects of reproductive decision-making, including the question under which circumstances they would want to have a child with their own genetic condition.

Paper long abstract

In recent decades, the life expectancy of people with chronic genetic conditions such as cystic fibrosis (CF) has increased dramatically. In this evolving healthcare landscape, more and more people are considering parenthood as a realistic option for the future. This situation provides a useful lens through which to re-examine the 'expressivist objection' (EO), which posits that testing and selecting against potential offspring with genetic conditions could cause moral harm by reducing individuals with these conditions to their genetics. Drawing on qualitative research conducted in Germany and teh US, we examine how people with CF navigate the moral and existential aspects of reproductive decision-making, including the question under which circumstances they would want to have a child with their own genetic condition. We propose reframing the debate around the EO by opening up discussions about intergenerational responsibilities between parents and children with genetic conditions, and discussing people's attitudes toward genetic testing in relation to their own experiences with receiving support.