UC Irvine

Huntington’s disease (HD) is an autosomal dominant progressive neurodegenerative condition which affects an individual’s behavior, cognition, and movement. Since HD is typically an adult-onset condition, although a minority of cases have been observed to fall outside of this age range, most individuals are involved in romantic relationships, marriage, and reproduction, before the onset of symptoms. How and when individuals with, or at risk for, HD approach dating, relationships, disclosure, and life decisions with their romantic partners is a topic that has not been well documented in the literature. This study analyzed 160 individuals both at risk for and diagnosed with HD, as well as their romantic life partners regarding the subject of disclosure and its impact on reproductive decisions including family planning and in vitro fertilization with preimplantation genetic testing for monogenic disorders (IVF/PGT-M). The general findings of this anonymous online survey revealed that participants agreed, regardless of being at risk or diagnosed with HD or the romantic partners of these individuals, that disclosure should occur in the beginning of the relationship and should include information about HD’s symptoms, the romantic partners’ caregiving aspect, as well as the inheritance pattern and its impacts on family planning. Interestingly, a majority of the participants ranked altered behavior and personality as the most important component in a disclosure to a romantic partner. The factors of inheritance as well as HD’s symptoms and lifestyle were considered very important when making family planning decisions, particularly with those who reported having no children. When surveyed about IVF/PGT-M, a substantial proportion of respondents indicated they would not consider using these procedures. While cost was the main barrier, some individuals also stated that they would not consider having any children irrespective of other barriers, due to not wanting their children to have a parent with HD. The information collected in this study gives healthcare providers, including genetic counselors, insight into disclosure and factors considered by those affected and at risk for HD, as well as their romantic partners, as they consider their future together.