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Narratives of Participation in Autism Genetics Research

机译：参与自闭症遗传学研究的叙述

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摘要

This article provides empirical evidence of the social context and moral reasoning embedded within a parents' decision to participate in autism genetics research. Based on in-depth interviews of parents who donated their family's blood and medical information to an autism genetic database, three narratives of participation are analyzed, including the altruistic parent, the obligated parent, and the diagnostic parent. Although parents in this study were not generally concerned with bioethical principles such as autonomy and the issues of informed consent and/or privacy and confidentiality of genetic information, a critical analysis reveals contextual bioethics embedded within these different narratives. These include the negotiations of responsibility that parents confront in biomedical research, the misguided hope and expectations parents place in genomic science, and the structural barriers of obtaining an autism diagnosis and educational services. Based on these findings, this article demonstrates the limits of a principle-based approach to bioethics and the emergent forms of biological citizenship that takes into account the social situations of people's lives and the moral reasoning they negotiate when participating in autism genetic research.
机译：本文为父母参与自闭症遗传学研究的决定中所包含的社会情境和道德推理提供了经验证据。基于对将其家庭的血液和医学信息捐赠给自闭症遗传数据库的父母的深入访谈，分析了三种参与的叙述，包括利他父母，义务父母和诊断父母。尽管这项研究的父母通常不关心生物伦理原则，例如自治权和遗传信息的知情同意和/或隐私和机密性问题，但严格的分析揭示了嵌入在这些不同叙述中的背景生物伦理学。这些包括父母在生物医学研究中面临的责任谈判，父母对基因组科学的误导的希望和期望，以及获得自闭症诊断和教育服务的结构性障碍。基于这些发现，本文证明了基于原则的生物伦理学方法的局限性以及出现的生物公民身份形式，这些因素考虑了人们生活的社会状况以及参与自闭症基因研究时所讨论的道德推理。

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