Living in a genetic penumbra: navigating uncertainty and morality.

IF 1.8 Q4 GENETICS & HEREDITY

Journal of Community Genetics Pub Date : 2026-09-22 DOI:10.1007/s12687-026-00945-0

Jonathan Henry, Pamela Sankar, Puneet K C Sahota

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引用次数: 0

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.

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生活在基因的半阴影中：驾驭不确定性和道德。

背景：基因检测无法用于许多多基因疾病，并且缺乏关于个体如何应对这种不确定性的研究。目的：本研究调查了Reddit社区（“subreddits”）的用户如何通过分析Reddit上的在线讨论来理解未知数量的遗传风险，双相情感障碍是一种常见的耻辱性疾病。方法：利用来自两个最大的双相情感障碍关注子reddit的线程（n个成员= 223,000和90,000）；使用网页刮板来识别相关线程，然后使用主题分析对其进行系统编码。结果：Reddit用户总体上同意双相情感障碍有遗传因素，但由于缺乏遗传风险的确定性，导致了关于生孩子的激烈争论。当一个人患有双相情感障碍时要孩子的道德问题，以及患有双相情感障碍的生活是否值得过下去，都是突出的主题。结论：早期的社会科学假设疾病遗传的知识将是授权的，但这里提出的结果显示了一个更复杂的画面。“遗传半影”提供了一个新的概念来解释个体如何在遗传不确定性的阴影下理解遗传风险。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Community Genetics GENETICS & HEREDITY-

CiteScore

3.30

自引率

5.30%

发文量

期刊介绍： The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.