Anticipating the future: Reproductive decision-making among people with cystic fibrosis in Germany

In this article, we explore reproductive decision-making among adults with a rare genetic chronic disease: Cystic Fibrosis (CF). CF is hereditary and can be tested for at various moments in prospective parent’s reproductive trajectory, namely before, during or after pregnancy. Based on 15 interviews with persons with CF in Germany who at the time of the interviews were considering having a child, were pregnant, already had a child, or had decided against having a child, we show that people with rare genetic chronic diseases face challenges that go far beyond those all young parents have to deal with. Persons with a rare and chronic disease are forced to anticipate the future beyond the common imagination of what kind of person their child will become. On the one hand, they must take into consideration their own future, that is the state and progress of their own disease. This may limit their ability to actively parent at all and in addition may be negatively impacted by the everyday efforts and struggles of parenting. On the other, as they potentially pass on their disease to their child, they also have to take into account their child’s future, its wellbeing and future life. This includes considerations regarding what constitutes a good and liveable life. • We compare practices of reproduction in people with the rare genetic disease Cystic Fibrosis • Long-term ethnographic research with patients, activists & care team • Improvements in therapy mean that surviving pregnancy is seen as a realistic option • Family plans are weighted against a double therapeutic burden of parent and child • Genetic testing of future children is considered a responsible reproductive strategy