The popularity of Direct-to-Consumer (DTC) Genetic Testing, rapid at-home tests that offer information regarding personal health and ancestral genealogy in a matter of weeks, has increased exponentially over the past decade (Ruhl et al., 2019). Companies such as 23andMe® have genotyped 12.8 million customers as of 2022 (23andMe.com, 2022), and with over 115 million online impressions in the first quarter of the same year (Faria, 2023) makes it the most talked about genetic testing company in the world. AncestryDNA, a competitor with more than 22 million global customers, takes the title as the largest global consumer DNA network (Ancestry, 2022), while still bringing in an online traffic of almost 35 million impressions from January to March 2022 (Faria, 2023). Driven by the entanglement of technological advancements alongside cultures of intense consumerism, the businesses behind these tests embody dynamic shifts that prioritise notions of a ‘pick and mix’ identity across contemporary fragmented societies (Soja, 1989). Understanding the commodification of genomic testing from exclusive and nascent scientific circles, towards popular consumption within the global mass market, demonstrates the multiple ways that DTC tests are impacting social relations near and far.
Figure 1: Screenshot taken from the 23andMe® homepage highlighting the pricing of genetic testing services. Source: Author.
The DTC genomic industry that we see today can be heavily attributed to the work achieved by the Human Genome Project (HGP). Launching in 1990 by the United States government, the $2.7 billion scheme brought together geneticists, institutions, laboratories, companies and private investors from across the globe, forming the world’s largest collaborative biological project whose aim was to understand the genetic code of humans through mapping and sequencing its complete set of genes, the human genome. In other words, the goal of the HGP was to identify and order the genetic instructions that are required to build a human being.
By 2003, researchers had declared the project "essentially complete", not only identifying and sequencing the genes that make up the human genome, but also achieving the identification of specific DNA sequences, known as alleles, that could cause specific diseases when mutated (Collins et al., 2003). Moreover, the employment of genome-wide association studies (GWAS) globally meant researchers had built an ever-growing database of genetic information that could be drawn on for comparison purposes (Waterhouse, 2015). The scientific expertise and research tools employed to classify and analyse this mass of genetic information ultimately meant that the HGP changed the face of genetic science: through identifying how genes interact and the specific parts of our genome that affect certain conditions and diseases, genetic science became opened up to the prospect of what could be named as a personalised medicine, where a one-size-fits-all approach becomes replaced by tailor-made treatments (Brittain et al., 2017).
Figure 2: Researcher working on the sequencing of the human genome. Source: Encyclopædia Britannica.
While the HGP laid the foundations for a ‘post-genomic’ age of science and medicine, it is vital to situate these developments within the frameworks of a consumeristic society to fully comprehend the expansion of genomic testing from niche scientific circles to the wider public. The emergence of DTC health and ancestry tests came in the early 2000s, as the combination of rapidly decreasing costs for genetic analysis encouraged from the private sector a “do-it-yourself” neoliberal attitude (Tamir, 2010). Despite protests from medical circles who voiced concerns of information being incorrectly disseminated and misunderstood, private actors propelled narratives of autonomy and empowerment that centred the consumer as holding the right to know their genetic information without the interference of doctors or hospitals (Allyse et al., 2018). With this push for the democratisation of genetic science, companies including 23andMe® (est. 2006), MyHeritage (est. 2003) and deCODEme (est. 2007) began to emerge, each offering services from monogenic testing and ancestry tracing to information regarding health enhancement and even the personal risks of developing particular disorders compared to the wider population (Borry et al., 2010).
Analysing DTC testing from a consumeristic perspective further conceptualises the rise of genetic science as a result of cultures of consumption (Borry et al., 2010). DTC companies that were taking advantage of neoliberalist positions within a capitalist society increasingly framed the commodification of one’s DNA as a recreational activity that anyone and everyone could participate in, but that would crucially reveal intimate details about one’s identity through the exploration of one’s DNA. With 23andMe®'s 2007 slogan “Genetics just got personal”, Sciona’s 2008 promises of a customised diet and lifestyle regimen based on an analysis of 24 genes, and ScientificMatch offering a dating service through sorting potential mates based partly on genes associated with the immune system (Kaufman and Niemann, 2008), the 2000s focus on the power of the consumer thus led to the shift of genetic technologies from medical to private circles.
Figure 3: The homepage of dating website ScientificMatch.com, a company that based its match-making on DNA and one's immune system. Source: The FATE Institute. Author: Jessica Charlesworth.
Moreover, the fragmentary nature of the contemporary world whereby identity is argued to be no longer fixed through racial constructs, socioeconomic position, gender and so forth, but self-determined and fluid, has constituted a significant factor in the popularity of DTC tests. From a genealogical perspective, whereby companies provide information of one’s genetic ancestry through comparing DNA to a genetic database, such services provide customers the recreational opportunity of delving into the possibilities of a complex genetic past to discover and choose which parts of their ancestral ethnic identity they felt connected with, reinforcing notions of a ‘pick and mix’ approach to identity construction (Redhead, 1990; Muggleton, 2000). Such tests therefore capitalise on tenets of the self as hybrid and changeable (Lyotard, 1999), seemingly providing customers with the ability to reshape notions of identity through the information found out about their genetic ancestry if they so wished.
These qualities have been explored in research surrounding genetic ancestry tests, such as Roth and Ivemark’s (2018) study that analysed the conditions under which ancestry results led to identity change. Proposing ‘genetic options theory’, which maintains that individuals are more likely to change their identity when it accords with a pre-existing aspiration for identity change, and when the individual perceives it would pass social appraisals among one’s peers (Panofsky and Donovan, 2019), Roth and Ivemark went on to report that in their research, white people were most likely to be dissatisfied with the supposed blandness of their identity, engaging in a form of racial privilege by way of taking advantage of racial fluidity rather than fixity. While Roth and Ivemark’s (2018) research has been invaluable in contributing to discussions surrounding the impact of DTCs on identity across diverse bodies, less attention has been paid to how social relations and kin networks are shaped through such actions.
Some development in this area has been achieved however due to the work of Paul Rabinow (1992), who developed the notion that people with shared biological conditions come together to form social networks, forming a biologisation of social life which he termed as biosocialisation (Franklin, 2001; Hacking, 2006). Taking Rabinow’s idea further, the concept of biosolidarity as put forward by Bridget Bradley (2021) argues for the recognition and visibility of group illness through such practices of relatedness. In the context of genetic testing that reveals both ancestral information and health characteristics, these notions are useful to explore how experiences of kinship are being reshaped through biosocial relations.
Figure 4: Screenshot taken from AncestryDNA's homepage, indicating that through genetic tests, people are able to connect with those they are genetically similar to as a form of biosocialisation. Source: Author.
Although the industry has faced backlash across medical fields and policymakers who were concerned that the information made available would be misleading and without practical use (Allyse et al., 2018), companies providing DTC health and ancestry tests to consumers today make up a $1.2 billion industry (BCC, 2020). Exploring the emergence of this billion-dollar industry and employing consumeristic frameworks to situate DTC genetic testing in the landscape of today is therefore important to ground the technological developments of the 1990s and early 2000s meeting at the crossroads with a consumeristic and fragmented society.
Allyse, M.A., Robinson, D.H., Ferber, M.J. and Sharp, R.R., 2018, January. Direct-to-consumer testing 2.0: emerging models of direct-to-consumer genetic testing. In Mayo clinic proceedings (Vol. 93, No. 1, pp. 113-120). Elsevier.
Borry, P., Cornel, M.C. and Howard, H.C., 2010. Where are you going, where have you been: a recent history of the direct-to-consumer genetic testing market. Journal of Community Genetics, 1(3), pp.101-106.
Bradley, B., 2021. From biosociality to biosolidarity: The looping effects of finding and forming social networks for body-focused repetitive behaviours. Anthropology & Medicine, 28(4), pp.543-557.
Brittain, H.K., Scott, R. and Thomas, E., 2017. The rise of the genome and personalised medicine. Clinical Medicine, 17(6), p.545.
Collins, F.S., Morgan, M. and Patrinos, A., 2003. The Human Genome Project: lessons from large-scale biology. Science, 300(5617), pp.286-290.
Faria, J., 2023. Most talked-about DNA companies worldwide Q1 2022. Statista. https://www.statista.com/statistics/1322868/dna-companies-online-reach/ Accessed 08/01/2023.
Franklin, S. 2001. “Biologization Revisited: Kinship Theory in the Context of the New Biologies.” In Relative Values: Reconfiguring Kinship Studies, edited by S. Franklin and S. McKinnon, 302–325. Durham, NC: Duke University Press.
Hacking, I. 2006. “Genetics, Biosocial Groups & the Future of Identity.” Daedalus 135 (4): 81–95.
Kaufman, D. and Niemann, C., 2008. Your Genome, Yourself. Proto. Massachusetts General Hospital. Accessed 09/06/2022.
Muggleton, D., 2000. Inside subculture. Berg Publishers.
Panofsky, A. and Donovan, J., 2019. Genetic ancestry testing among white nationalists: From identity repair to citizen science. Social studies of science, 49(5), pp.653-681.
Rabinow, P., 1992. Artificiality and enlightenment: from sociobiology to biosociality. In The Ethics of Biotechnology (pp. 101-122). Routledge.
Redhead, S., 1990. The end of the century party: Youth and pop towards 2000. Manchester University Press.
Roth, W.D. and Ivemark, B., 2018. Genetic options: The impact of genetic ancestry testing on consumers’ racial and ethnic identities. American Journal of Sociology, 124(1), pp.150-184.
Ruhl, G.L., Hazel, J.W., Clayton, E.W. and Malin, B.A., 2019. Public attitudes toward direct to consumer genetic testing. In AMIA Annual Symposium Proceedings (Vol. 2019, p. 774). American Medical Informatics Association.
Soja, E.W., 1989. Postmodern geographies: The reassertion of space in critical social theory. Verso.
Tamir, S., 2010. Direct-to-consumer genetic testing: ethical–legal perspectives and practical considerations. Medical Law Review, 18(2), pp.213-238.
Waterhouse, M., 2015. GVHD meets GWAS. Blood, The Journal of the American Society of Hematology, 126(25), pp.2662-2663.
Cover: Source: Illustration by Jo Zixuan. The New Yorker. Accessed 11/01/2023. https://www.newyorker.com/magazine/2022/05/09/our-obsession-with-ancestry-has-some-twisted-roots-maud-newton-ancestor-trouble
Figure 1: Screenshot taken from the 23andMe® page, highlighting the pricing of genetic testing services. Source: Author. Accessed 08/01/2023 https://www.23andme.com/
Figure 2: Researcher working on the sequencing of the human genome. Source: Encyclopædia Britannica. Punctum/Press and Information Office of the Federal Government of Germany. https://www.britannica.com/event/Human-Genome-Project/images-videos#/media/1/275706/106549 Accessed 08/01/2023.
Figure 3: The homepage of dating website ScientificMatch.com, a company that based its match-making on DNA and one's immune system. Source: The FATE Institute. Author: Jessica Charlesworth. https://gingery.wordpress.com/tag/service-design/ Accessed 08/01/2023.
Figure 4: Screenshot taken from AncestryDNA's homepage, indicating that through genetic tests, people are able to connect with those they are genetically similar to as a form of biosocialisation. Source: Author. https://www.ancestry.co.uk/c/dna/offer/?stay&preview=true&ancid=co9xktlc97&gclid=CjwKCAiA8OmdBhAgEiwAShr40zu1UbOcNUhGgKje6fP_k_7ZS0TpJt0bEQhDZMCqVG1HjVrqzftTPRoCZcYQAvD_BwE&gclsrc=aw.ds&o_xid=81657&o_lid=81657&o_sch=Paid+Search+Brand Accessed 08/01/2023.