ATTITUDES TOWARDS REPRODUCTIVE OPTIONS THROUGH THE LENS OF ADULT-ONSET, NEUROGENETIC DISORDERS
Embargo until
2022-12-01
Date
2020-12-08
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Johns Hopkins University
Abstract
BACKGROUND: Individuals at risk for adult-onset hereditary neurological conditions are presented with a variety of reproductive options. Although there is a growing body of research regarding individuals’ views about the available reproductive options, there is
significant variation in the acceptability and choice of each reproductive option.
Prominent themes within qualitative studies suggest that personal experience with the condition and perceived severity of the condition may influence perspectives on reproductive options. However, these themes have yet to be analyzed on a broad scale
using validated instruments. We hypothesized that individuals with more experience with a condition will perceive the condition as more impactful and severe, which in turn will
lead them to more highly value reproductive options that allow them to avoid having an affected child and report a stronger desire to choose these options.
METHODS: Individuals diagnosed with or at risk for a group of adult-onset, neurological conditions were recruited from Johns Hopkins Hospital (JHH) and a number of national support organizations. Perceived psychosocial impact of the disorder, childhood experience with the disorder, and severity of the disorder were assessed. Reproductive options were grouped based on whether the option includes avoiding having an affected child. Likert scales were used to measure how much each of the 7 reproductive options
align with the respondent’s values and how likely they would be to choose each option.
RESULTS: 259 eligible individuals participated in this study. There were nine disorders represented, with the highest proportion of respondents (50.2%) at risk for Huntington’s Disease (HD). Greater perceived psychosocial impact of disease was significantly positively correlated with attitudes towards avoidant reproductive options, whereas
greater perceived severity was negatively correlated with attitudes towards non-avoidant reproductive options. Additionally, there was an incongruence between an individual’s past reproductive choices and attitudes towards those choices.
CONCLUSION: Attitudes towards reproductive options in adult-onset, neurological conditions are incredibly complex, and providing a referral to a genetic counselor to discuss reproductive options may be appropriate for most individuals.
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Keywords
neurogenetics, neurology, genetics, genetic counseling, genetic counselling, huntington, reproductive, reproduction, assisted reproductive technology, ART, preimplanation genetic testing, PGT, perceived severity, perceived impact, disease perception