Harris Anna, Kelly Susan E, Wyatt Sally
Technology and Society Studies Department, Faculty of Arts and Social Sciences, Maastricht University, Maastricht, The Netherlands.
ESRC Centre for Genomics in Society, University of Exeter, Exeter, UK.
New Genet Soc. 2014 Mar;33(1):60-78. doi: 10.1080/14636778.2014.884456. Epub 2014 Mar 7.
Despite a growing personal genomics market, little is known about how people engage with the possibilities offered by direct-to-consumer (DTC) genetic testing. In order to help address this gap, this study deploys narrative analysis of YouTube videos posted by individuals who have purchased DTC genetic testing for disease. Genetic testing is said to be contributing to new states of illness, where individuals may become "patients-in-waiting." In the videos analyzed, we found a new form of storytelling about this ambiguous state of illness, which we refer to as autobiology. Autobiology - the study of, and story about, one's own biology - concerns narratives of sense-making through forms of biological practice, as well as wayfaring narratives which interweave genetic markers and family histories of disease. These autobiologies - part of a broader shift toward public stories about genetics and other healthcare technologies - exhibit playfulness, as well as being bound with consumerist practices.
尽管个人基因组学市场不断发展,但对于人们如何利用直接面向消费者(DTC)的基因检测所提供的可能性,我们知之甚少。为了填补这一空白,本研究对那些购买了用于疾病检测的DTC基因检测的个人在YouTube上发布的视频进行了叙事分析。基因检测据说正在促成新的疾病状态,在这种状态下,个人可能会成为“等待中的患者”。在分析的视频中,我们发现了一种关于这种模糊疾病状态的新叙事形式,我们将其称为“自我生物学”。自我生物学——对自身生物学的研究及相关故事——涉及通过生物实践形式进行意义建构的叙事,以及将基因标记和疾病家族史交织在一起的历程叙事。这些自我生物学叙事——是关于遗传学和其他医疗技术的公共故事这一更广泛转变的一部分——展现出趣味性,同时也与消费主义行为相关联。