Reproductive decision-making among individuals at risk for familial amyotrophic lateral sclerosis

This qualitative study explored the reproductive decision-making process in individuals at 50% risk for familial amyotrophic lateral sclerosis (FALS) from families with a known genetic mutation. We spoke with 10 individuals utilizing a semi-structured interview. Participants had a first-degree relative with FALS, made reproductive decisions in the past 30 years and did not know their genetic status during decision-making. We delineated themes emerging in individuals who chose to have children, those who chose not to have children, and themes describing the process in general. Results showed that those who chose to have children believed that regardless of disease, life is productive. They compared ALS relatively favorably to other diseases, always planned on having children, and hoped for a cure. Individuals who chose not to have children had extensive experience with ALS and caretaking, saw ALS as an inevitable tragedy, and avoided serious relationships. In consultation with partners, individuals considered other reproductive options. Conversations varied in length, and often strengthened relationships. Children experiencing death of a parent was a primary concern. In conclusion, the reproductive decision-making process is complex. Results can guide future research and provide direction for healthcare professionals when discussing the family planning process and prior to predictive genetic testing.