Bachelorarbeit, 2021
26 Seiten, Note: 95/100
1. Introduction
2. Theoretical Background & Literature Review
The commercialization and Commodification of Health and Genetic Data
Ancestry and genetics
Theoretical framework of analysis
Methodology
3. Analysis and Findings
Biologizing Ancestry
Creating self and identity-related uncertainty around being uninformed about one's ancestral background
4. Concluding Remarks and Discussion
5. Bibliography
6. Appendix
Due to scientific progressions made in genetic data collection and analysis in the last two decades, genetic testing has become more affordable and increasingly available. This fact has contributed to the emergence of a new privatized, capitalist and internet-based form of direct-to-consumer (DTC) genetic testing services. The DTC genetic industry is greatly varied in terms of the different types of genetic tests and services it offers, identified and classified by Phillips into six general categories in health testing: carrier testing, nutrigenetic testing, ancestry, genetic relatedness, athletic ability, child talent, superstitious testing (non-consensual, such as infidelity), and matchmaking. (Phillips, 16-20)
DTC genetic tests have been rapidly gaining popularity over the last few years with several millions' genetic data already collected in DTC companies' commercial data bases. (Phillips, 2016:17) This study will focus on DTC companies that offer genetic tests for genealogy and ancestry due to the popular surge in purchases of genealogy DTC DNA tests during the last few years. According to an article published in The MIT Technology Review Journal on February 11, 2019, approximately 26 million individuals in The United States alone, have purchased and taken a genealogy genetic test from a DTC genetic testing company by the year 2019. The public interest in DNA as an informative tool regarding health, ancestry and more, is attributed, according to the article, to the "heavy TV and online marketing" by DTC genetic companies that have led to "a record year [2019] for sales." (Regalado, 2019) The success of DTC companies' advertising and marketing campaigns is reflected quite clearly in the staggering statistic published by CNBC reporting that as many people have purchased an at-home DNA test for genealogy in the year 2018 alone, as in all the previous years since 2012 combined. (Bursztynsky, 2019) This surge in purchases of commercial direct-to-consumer genetic tests has led MIT to describe the phenomenon in one of its articles with the sentence "the genetic genie is out of the bottle, and it's not going back." (Regalado, 2019)
DTC genetic testing companies' increasing popularity has sparked a debate about the nature of commercial DNA tests. Supporters of DTC companies argue that harnessing the power of the internet and the commercialization of genetic data can help increase public access to genetic tests, since those tests might not be authorized by a physician to any patient. (Hogarth, Javitt & Melzer, 2008: 162) On the other hand, critics of DTC companies have expressed concern regarding the ambiguity surrounding DTC tests' validity, utility, and quality. (Phillips, 2016) A good percentage of DTC companies are privatized and operate outside medical certification, offering consumers genetic tests directly and without the intervention of a physician. (Phillips, 2016) A fact that, combined with the adoption of a digital medium as means to provide health-related products have led many researchers and academics (e.g., Harvey, 2010; Phillips, 2016; Walajahi, Wilson & Hull, 2018; Ruckenstein, 2018) to analyze and critique the DTC genetic industry from different perspectives: medical, regulatory, ethical, legal, data security and privacy, and commercial.
Most of the studies previously conducted by researchers have focused on the medium of TV and the prism of online and digital marketing (such the online video streaming website YouTube) and noted DTC genetic genealogy companies' utilization of the narrative of self-discovery by invoking fundamental human desires of personal identity and a sense of belonging to a community. This study will focus on one of the leading companies in the DTC genealogy genetic testing industry – AncestryDNA – (Regalado, 2020) and aims to examine the ways in which AncestryDNA frames the concept of human ancestry and the cultural, social, and psychological meanings it associates it with. I argue that AncestryDNA frames ancestry as s treasure trove full of information about an individual's ancestral lineage by blurring the limitations of DNA testing, along with the portrayal of ancestry as a crucial part in self-realization, building one's identity (discovering oneself), and achieving a sense of belonging to a group. The study will focus on framings of ancestry and genetics in AncestryDNA's mobile application ('app'), through which the user can create an account containing his or her information, order an ancestry genetic test, and then view the results. I argue that AncestryDNA promotes its genetic tests via its mobile app through two narratives. The first, the narrative or framing of genetic data or DNA as being a reliable informative tool regarding one's ancestral background and lineage. Secondly, AncestryDNA frames ancestry as being an important part of self-realization and the process of creating your own individual identity, while also achieving a sense of belonging to a community – both are deeply fundamental human desires and psychological needs that AncestryDNA invokes in its consumers, and then frames its DNA tests as the solutions and the opportunity for consumers to fill those symbolic needs. This research's objective will be achieved through applying the walkthrough methodology (Light, Burgess & Duguay, 2018) in the analysis of AncestryDNA mobile application's interface – architectural design, promotional materials, rhetoric, and visual representation of the DNA test results. The analysis of the contents and elements in the app will rely on the psychological theoretical framework that combines Hogg's uncertainty-identity theory and Tajfel's social identity theory in social psychology.
It has been suggested that the commercialization and packaging of a person's genome into a consumable product in the form of a genetic analysis report can, in part, be attributed to the "qualitative shift" of genetic medicine from "the concept of genetic disease to the concept of genetic information in all disease." (Harvey, 2010: 365; Khoury, 2003: 266) Where once genetics were considered to determine one's health and susceptibility to certain diseases indefinitely, today genetics are viewed as one factor that effects a person's health alongside other environmental factors that play a role such as diet, fitness, and lifestyle. According to Khoury (2003), genetics today are viewed as providing information that can help a person adjust her\his lifestyle choices accordingly (diet and exercise for example) in order to maximize their health. This narrative of using personal data as a tool for self-discovery is one that is clearly adopted by DTC genetic testing companies in an attempt to establish a "causal relationship between genetics and identity." (Walajahi, Wilson, & Hull, 1747)
The commercialization of genetic data constitutes only a fraction of the different types of commercialized data today (both about consumer's personal details and data about them – genetic, spatial, data regarding their consumption and purchasing habits, etc.). This data is considered to be invaluable in today's 'age of information'. DTC genetic testing companies' main goal is to amass as big a data base of personal information as well as genetic information as possible, which they may then use for potential future research, or capitalize on it by selling it to interested third parties for purposes such as targeted marketing or broader surveillance. (Phillips, 16) The capitalist information-based business model that is at the core of DTC companies' business model is archetypal of what Ruckenstein describes as a "data enhanced existence" and is apparent also in the application of DTC companies, and the genetic report analysis that consumers receive which contains numbers and graphs representing data about the genetic background of the consumer.
First, it is important to define and note the difference between three distinct terms which, in many instances, are interpolated and thus people often confuse them with one another: ancestry, ethnicity, and race. The term 'ancestors' is broadly and generally defined as the people from whom you are descendant. In the biological and genetic context, your ancestors are defined more specifically as the people from whom you are biologically descendant and thus share a similar genetic background. (Putman and Cole, 2020) Tracing familial ancestral line back to more than three generations is not always easy, and the study of genealogy (the study and practice of tracing ancestral lineages) utilizes a variety of traditional genealogical methods to trace an ancestral line, such as historical records, oral interviews, genetic tests, family trees, etc. Two concepts that are often discussed in relation to ancestry are the concepts of ethnicity and race. Race is generally defined as the categorization of humans into groups that share similar physical attributes and characteristics such as skin color and other physical features. Ethnicity, on the other hand, is a broader classification of humans into groups in which the members of each group identify with one another and with their belonging to the same group that shares similar characteristics and attributes such as history, nationality, language, traditions, cultural background, and religion. (Blakemore, 2019) However, it is important to note that both the concepts of ethnicity and race are "social constructs used to categorize and characterize seemingly distinct populations," that first emerged and were institutionalized in the colonial era where they became an irreversible and major shaping factor of the human experience until this day.
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