Peer-reviewed article
Living in a genetic penumbra: navigating uncertainty and morality.
Henry J, Sankar P, Sahota PKC ·
Summary
Written by AI, not yet AICS's view ·Key points
Limitations
Abstract
Background Genetic tests are not available for many polygenic illnesses, and there is a lack of research on how individuals navigate this uncertainty. Objective This study examines how users of Reddit communities ("subreddits") dedicated to bipolar disorder, a commonly stigmatized condition, make sense of an unknown amount of genetic risk through analysis of online discussions on Reddit. Methods Threads from the two largest bipolar disorder-focused subreddits (with n members = 223,000 and 90,000) were utilized; a web scraper was used to identify relevant threads, which were then systematically coded using thematic analysis. Results Reddit users overall agreed bipolar disorder had a genetic component, but the lack of certainty around the amount of genetic risk resulted in intense debates about having children. The morality of having children when one has bipolar disorder, as well as whether a life with bipolar disorder is worth living, were prominent themes. Conclusion Early social science posited that knowledge of illness heritability would be empowering, but the results presented here show a more complex picture. "Genetic penumbra" offers a new concept to explicate how individuals make sense of genetic risk while living under the shadow of genetic uncertainty.