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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. 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.
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The spitterati were some of the early adopters of a new genetic testing service, offered by 23andMe. In December23andMe announced that they would comply with the FDA's directive and stop selling tests to new customers while they underwent the review process: These genetic testing services emerge in a post-Human Genome Project environment, where the costs of genetic analysis are plummeting. The services are offered to consumers who are becoming increasingly exposed to, and knowledgeable about, new kinds of genetic technologies Petersen Petersen, A.
Is It as Radical as Claimed? Genetic research breakthroughs, cheek swabbing forensic pathologists and celebrities discovering their ancestral roots are littered throughout the North American, European and Australasian media landscapes. Genetic testing is capturing the attention, and imagination, of people who can not only buy genetic tests via the internet, but can also go online please click for source find relatives, share their results with strangers and take part in research.
It is no longer only the spitterati, the elite early adopters, being tested and Youtube Cat Dating Video Introduction To Genetics High School, but hundreds of thousands of individuals are being tested, 2 2 This figure is based on the customer base of one DTC genetic testing company, 23andMe, being overalone, in April Fishmanand M. Motivations and Moral Imperatives of Early Users. O'Connorand H.
Systematic Review of the Literature on User Perspectives. Because of these difficulties, many researchers have studied potential users of DTC genetic tests Cherkas et al. Spectorand B. Blandet al.
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Results from 3 Youtube Cat Dating Video Introduction To Genetics High School Population-Based Surveys, St Pierreand M. Schorkand E. Morleyand L. Digging a Little Deeper. In order to achieve the analytical power that comes with large sample sizes though, the details and richness of individual accounts are often lost. We suggest, however, that there is much to be learned from individual accounts of genetic testing, in regard to who is being tested, the experience of undergoing testing, the setting in which testing occurs and the ways in which individuals interpret results.
The most visible personal accounts of undertaking DTC genetic testing to date are written by celebrity-scientists, journalists and other public figures Nisker and Daar Youtube Cat Dating Video Introduction To Genetics High School, J.
Personal Genomes and Digital Media. A Personal Exploration of Retail Genetics. View all notes There is, however, a growing body of non-elite users.
These users are documenting their stories across a range of web-based media. Others have examined individual testimonies about DTC genetic testing on blogs and on company websites Nordgren and Juengst Nordgren, A. Howardand P. An Exploratory Study of Personal Stories. We examine videos posted by users of DTC genetic testing services in order to understand more about how people are engaging with this technology. Comparing the YouTube narratives to illness narratives traditionally examined by social scientists, we argue that the videos narrate an emerging ambiguous state of illness tied up with learn more here technologies.
They are also autobiological narratives in the ways in which they document a sense of self-making through forms of biological practice and scientific experimentation, practices which exhibit a form of playfulness, while simultaneously being bound up with consumerist concerns. In Februarywe queried the YouTube database for English-language videos uploaded by users of genetic testing services in a list of companies compiled by The Genetics and Public Policy Center Genetics and Public Policy Center.
We found 20 videos in total, all uploaded by users of the American company 23andMe, a company which actively engages with web 2. In selecting videos, we excluded explicitly promotional videos such as those posted by companies themselves. As we discuss later however, the delineation between promotional and non-promotional videos is not clear. The 20 videos in our sample broadly fit into three categories or genres: Our unit of analysis is the posted video visuals, speech and other soundsincluding surrounding online content, such as other YouTube videos, hyperlinks and comments.
We treated the videos as texts. This has theoretical, methodological and ethical implications. View all notes For instance, we did not contact the YouTubers about analyzing their videos.
Privacy, Ethics and Alienation: An Open Source Approach.
Leonhard Hennen et al. Received 20 Aug As previously discussed, Gubrium and Holsteinin particular are as much interested in the ways that storytellers and the conditions of storytelling shape the stories, as they are about the content of the stories. Singularity University 23andMe Spit Party: Wallsand J.
There are many ethical and methodological reasons for contacting the YouTubers, especially in order to understand more about their engagement with DTC genetic testing and indeed this could be another study. However, after careful consideration, we chose not to make personal contact because, for the purposes of this research, we were interested in the texts themselves, and the context of these texts, as video narratives shared with a public audience.
The YouTube material was thus analyzed using thematic narrative analysis. As a guiding framework, we draw upon the work of Gubrium and Holstein Gubrium, J. Thousand OaksCA: Youtube Cat Dating Video Introduction To Genetics High School and Holstein Gubrium, J. They emphasize the social organization and interactional dynamics of narratives. We consider the material conditions of storytelling bedrooms, computer hardware, spit kits, bedspreads, posterstexts speech, computer software, the video image, hyperlinks and issues genetic testing available to the public, ambiguous states of illnessand the ways in which these are woven together in the story.
We look at editing, both of the story being told and of the video, and performativity, examining how the storytellers position themselves in relation to the audience and other narratives. We explore the embodied aspects of storytelling facial expression, gestures, salivating, typingintertextual components such as different mediums and platforms used and referred to, as well as how words, ideas and plots were drawn from other narratives.
We consider these aspects in the context of the emerging market for DTC genetic testing, drawing upon our broader research in this area Harris, Wyatt, and Kelly Harris, A. Wyattand S. Kellyand S. Adamsand S. Public engagement with medicine has been researched extensively from the viewpoint of illness narratives, which arguably contest dominant frameworks of expertise about health and illness Bury Bury, M.
These stories include those collected and analyzed by researchers, as well as autopathographies Couser Couser, G. Illness, Disability, and Life Writing. The University of Wisconsin Press. A significant proportion of empirical work on illness narratives draws on frameworks proposed by Arthur Frank Frank, A. Body, Illness, and Ethics. The University of Chicago Press.
Frank's Frank, A. Michael Bury Bury, M.
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Biographical Work and Deprivatization. As previously discussed, Gubrium and Holstein Gubrium, J. While we draw on the illness narrative literature in order to think about the sociality of telling stories about health and illness, the context of storytelling in the case of DTC genetic testing differs from illness narrative in that the storytellers are not patients; they are not unwell. Instead, we found something different in the context of DTC genetic testing narration.
While there may be aspects of the narrative genres identified by illness narrative theorists in these YouTube stories, these are quite different storytelling contexts. Timmermans and Buchbinder Timmermans, S. In a similar vein, Novas and Rose Novas, C. The convergence of the internet and genetics in DTC genetic testing means that it is pertinent to consider the digital nature of storytelling about these issues.
The autobiologies we examine are digital narratives, told, uploaded, shared and discussed through the internet, via webcams Miller and Sinanan Miller, D. Youtube Cat Dating Video Introduction To Genetics High School internet and related technologies allow for new kinds of self-expression, through the use of written and spoken words, images moving or stillhyperlinks, avatars and other online features.
The study of digital illness narratives is still in its infancy. Researchers who have examined how individuals are engaging read more YouTube for health and illness issues have looked at, for example, obesity Yoo and Kim Yoo, J. Rather than examine narratives however, these studies focus on the role of these videos in health promotion and raising public awareness, how they provide information and support and potentially change behavior.
Further qualitative research has been conducted on the video narratives posted on the HealthTalkOnline website Newman, Ziebland, and Click Newman, M. Zieblandand K. Pilot Evaluation of www. These are interviews about particular health conditions, videos made by researchers or videographers. We are interested in individuals' self-made narratives about the experience of genetic testing.
We thus build upon and contribute new insights to a body of literature about illness narratives, digital narratives and patients-in-waiting in our study of narratives about DTC genetic testing found on YouTube. We take Frank up on this provocation and consider what other kinds of stories there are to be found in relation to genetic testing. We consider these stories in context, that is, the content of the stories, the way they are being told and the circumstances of the telling, including their performativity.
In the following section, we examine some of the common features of these videos, before exploring in more detail the autobiological nature of the stories. YouTube was launched in as a user-friendly video-sharing site, and bought by Google in Shifman Shifman, L.
It has been described as enabling a new visual genre of individual expression, with some scholars also referring to a YouTube community Shifman Shifman, L. YouTube is a particularly good place in which to examine stories about genetic testing for a number of reasons. First, it is used by many DTC genetic testing companies, and presumably by a number of their customers as well.
Thrift7 argues that the world in which Ingold's wandering wayfaring line exists is being rebuilt out of a field of numbers and calculable coordinates. I received this [spittoon] from 23andMe. We take Frank up on this provocation and consider what other kinds of stories there are to be found in relation to genetic testing.
Second, it provides access to users' stories in the public domain, with qualitatively rich details about the process of undergoing testing and interpreting results, results which are their own rather than the hypothetical scenarios used in many of the survey studies mentioned previously. Irrespective of whether the videos were filmed with a stationary webcam or by someone with a handheld camera, they mostly focus on one person, except for one video of a spit party in which multiple users are visible.