The Myth of Consumer Agency: Genetic Testing and Identity Politics

“The burgeoning industry of genetic ancestry reveals how genetics has offered new technology through which individuals can link to intersections in time and space in complex ways that recapitulate understandings of racial order, origins, and group membership”

(Lee, 2013: 1)

Direct-to-consumer genetic testing is gaining popularity and is increasingly informing identity. For many, these simple “do it yourself” tests are presented as ways to learn invaluable information about one’s ancestral history, and by extension identity. They are marketed as easy, painless, and relatively cheap, and employ language that seemingly gives power to the consumer in the form of rich knowledge about one’s personal history and make-up. In this way, genetic testing is quickly biologizing and making scientifically legitimate notions of the social and cultural nature of identity politics. The aim of this ethnographic project is to examine the tapestry of “agency” these genetic testing companies market to consumers in relation to defining and better understanding themselves   and to shed light on the ways in which a consumer’s hopes, fears, and thoughts about their genetic history align or break off from the information genetic testing companies like 23andMe and African Ancestry promise to deliver and then actually present.

I. For a Fee: 23andMe

The rising popularity of direct-to-consumer genetic testing can be manifested in the success of 23andMe, a privately held personal genomics and biotechnology company in Mountain View, California. On its eye-catching and colorful webpage, that presents genetic ancestry testing as modern, innovative, and edgy, 23andMe states its intent “to be the world’s trusted source of personal genetic information.” Using a myriad of bright colors, 23andMe presents a neatly wrapped and “easy to use” package through which consumers can, for a mere $99, “trace your linage back 10,000 years and discover your history from over 750 maternal lineages and over 500 paternal” (23andMe). Too, with this “do it yourself” kit, one is told to “bring your ancestry to life” and “preserve your family’s history by highlighting names, dates, events, and more” (23ndMe). While 23andMe’s success is rooted in a scientific field that is not novel or new, it is part of a new post-genomic world now tailored towards for-profit industry. As the self-proclaimed “largest DNA ancestry service in the world,” 23andMe is changing the ways in which individuals are identifying and defining themselves [2] . In an effort to generate revenue, 23andMe is marketing itself as a reliable, eye-opening, and innovative company through point blank statements of “fact.” Doing so allows 23andMe to paint itself as a source for easy and relatively cheap access to information that helps individuals better understand themselves socially, culturally, and medically through their genetic make-up.

Zander and Paul [1], two friends I interviewed separately, represent the most typical consumer pool for 23andMe. Both are economically well-off White males who purchased 23andMe kits out of curiosity, and as students at an elite private university, are well educated. As such, their initial interactions with 23andMe came from printed and online literature. For Paul, this interest was sparked when information about 23andMe “first came out in journals.” Paul’s final decision to order a kit, however, was  “decided…after taking a class, BIOE 131, Ethics in Bioengineering.” Too, Zander replied quickly with “I think I heard about it from a media source …probably TechCrunch… and following technology in general.” Ultimately, he decided to purchase a test because, “my roommate had one done and it helped confirm my interests in getting one.” Though both Paul and Zander initially heard about 23andMe in reputable sources [3], their personal experiences, whether in the classroom, or the dorm room, served as final influences in the decision to purchase a kit.

At the present moment, only Paul has received his results; Zander expects to hear from 23andMe in the next week or so. As a student on the pre-med track, Paul is better versed in genetics than the usual 23andMe customer. When asked about his initial understandings of the test, Paul replied, “I understood the basis of the tests, SNPs [single nucleotide polymorphisms] not sequencing… I understood that 23andMe captures less than 1% of your genome, but I still thought the GWAS studies [Genome Wide Association Studies] had some merit… the test involves a SNP array, enzymes used to chop up DNA from saliva into fragments, fragments applied to chip which hybridize with short DNA probes attached to fluorophores which light up or do not light up to the accuracy of a single base pair… the test’s data is then submitted to GWAS correlation studies.” Zander on the other hand joking explained, “they do some sort of “science” to get the DNA segments…this part I am unclear on,” but he then went on further to say “then they do probabilistic analysis to correlate your strands with the strands of people with known conditions…medical conditions or ancestry.”

The background information Paul and Zander possess is not commonplace, and certainly not explained as in depth by 23andMe on their webpage. Under the “How it Works” tab, 23andMe publishes a short “go inside the lab” video and briefly writes, “we use the Illumina HumanOmniExpress-24 format chip. Our chip consists of a fully custom panel of probes for detecting single nucleotide polymorphisms (SNPs) selected by our researchers. The selection as made to maximize the number of ancestry features available to customers as well as offer flexibility for future research” (23andMe). At the bottom of the “Ancestry” tab, the company goes into a slightly more detail: “we trace everyone’s maternal ancestry by using a small piece of DNA passed down from mother to child. While males can also uncover their direct paternal ancestry through the Y chromosome that’s passed down from father to son, both men and women receive information about both sides of their family from the 22 other chromosomes” (23andMe). It is clear that as genetic research becomes increasingly “mainstream” companies, like 23andMe are all too eager to simplify and generalize in an effort to generate profit while simultaneously presenting complicated technologies and genetic vocabularies as straight forward and basic – this genetic reductionism is not only a problem, it is problematic. Such classifications are not only reductionist; they are also compacting.

I got useful information for the first 10 minutes of looking at my results, but that’s about it. I haven’t seen any new disease info, and the ancestry stuff was pretty boring (basically 100 percent from western Europe). There used to be a feature where you could see your raw data (i.e. the actual base pairs at the SNP locations), but I think they took that away… That would have been cool for me to look up if I found a new SNP in the literature that I wanted to check for in my own genome” – Paul

For many, the promises of these genetic tests are exciting. In a world that is increasingly globalized and diverse, a desire to know one’s “true self” can be appealing. Paul’s response about his results, however, highlights general feelings of disappointment. It is helpful here to look at Sandra Lee’s 2013 piece “Race, Risk, and Recreation: The Limits of Play” which underscores the threat of false and misleading advertising. As Lee points out, “direct-to-consumer personal genetics testing companies play guardian to this consumer play, providing tailored genetic scripts and highlighting how consumers might use their information” (Lee, 2013: 1). 23andMe has done just this with the broad claims on its webpage and statements directly targeting the individual consumer like  “learn hundreds of things about your health” and calls for an “active role in managing [your health]” (Casey, 4). Though 23andMe’s current webpage has eliminated some of these statements and reduced its available services due to a pending lawsuit (“we have suspended our health-related genetic tests to comply with the U.S. Food and Drug Administration’s directive to discontinue new consumer access during our regulatory review process” [4]),  it had previously advertised “personalized recommendations” and even issued the claim that “living well starts with knowing your DNA” (23andMe) (Casey, 4). Before the Food and Drug Administration crack down, 23andMe urged consumers to get tests done for the sake of “arming your doctor with information” about your genetic history. Lee, however, shows that outside of the supposed health information 23andMe was able to offer, these tests also raise questions about “ancestry, ethnicity, and genetic variation, and their implications for public understanding of the relationship between race and genetics” (Lee, 2013: 1). As Lee and other anthropologists argue, many of these genetic tests are done using old world race categories, ones that are deeply linked with old social biology.

These ties to old world categories become apparent in the language 23andMe uses on its webpage. In addition to helping individuals “find out what percent of your DNA comes from populations around the world, ranging from East Asia, Sub-Saharan Africa, Europe and more,” the company also promises to allow consumers to “break European ancestry down into distinct regions such as the British Isles, Scandinavia, Italy, and Ashkenazi Jewish” (23andMe). Most striking of all, however, is the direct appeal to groups who are atypical 23andMe customers: “people with mixed ancestry, African Americans, Latinos, and Native Americans will also get a detailed breakdown” (23andMe). The singling out of those with “mixed ancestry” highlights notions of admixture and purity [5]. It becomes clear that there is a preconceived notion of, to use Mary Douglas’s terms, “purity” in relation to the “danger” of admixture. The 23andMe statement suggests that while genetic information for those of “mixed ancestry” is more difficult to delineate, “a detailed breakdown” is still possible, and is possible because of the power of science.

Further, 23andMe offered the option to self-select for race in its tests for disease risk, claiming that self-selecting race and ethnicity placed power in the hands of the consumer. However this mythical “agency” given to the consumer is also a clear way to point to other flaws in the system. In many ways these commercialized “genetic kinship” tests are inherently corrupted in the ways they use old world racial categories to define one’s ancestral heritage. Although it is true, that “a challenge for companies that offer genetic ancestry testing is navigating the contentious and highly politicized issue of race in describing ancestry results,” placing the choice to self-select race solely in the hands of the consumer renders the disease risk portion of the tests very visibly arbitrary and explains why a current lawsuit is pending against 23andMe for it’s “false and misleading practices” (Lee, 2013: 13).

II. African Ancestry: Join the Movement

“African Ancestry is a company that helps transform the way people view themselves and the way they view Africa!”

– African Ancestry homepage

 In contrast to the experiences of Zander and Paul with 23andMe, are the experiences of residents of the African and African-American “themed” house on a university campus who underwent genetic-testing through a company by the name of African Ancestry, which was founded in 2003. I began my exploration in an interview with the Residential Fellow of the house.

Me: How did Uj come across these tests? What were the reasons behind bringing these tests to the community?

 J: “In 2011-212 school year, the theme of Ujamaa was TrUj-life based off the MTV show True Life. Our theme was all about an exploration of self and the intersectionality in terms of identities and self. As part of that, we also did these African ancestry tests…we had I think about 5 or 6 people who took the test. And these are students, right? And the person who owns the company is Stanford alum, a black woman… Gina Page. We did the tests, did the swabs or whatever, and sent them in. She came in for a presentation and revealed everyone’s ancestry in front of an audience of people…”

The African Ancestry webpage describes the company as “the world leader in tracing maternal and paternal lineages of African descent having helped more than 150,000 people re-connect with the roots of their family tree” (African Ancestry). In contrast to 23andMe which is all about an individual tracing “your lineage with a personalized analysis of your DNA,” African Ancestry “is committed to providing a unique service to the black community by working daily to improve the cultural, emotional, physical, spiritual and economic wellbeing of people across the African Diaspora” (African Ancestry). Too, the webpage uses catchy phrases like “find the African in your American – join the movement!” or “find the Caribbean in your American – join the movement!” to garner individual interest through the lens of community (African American)[6].

Additionally, African Ancestry uses similar advertising methods to 23andMe [7], both webpages are peppered with testimonials and exciting interviews with individuals who discovered a part of themselves that was irrefutably an intrinsic element of their identity. The website makes large scale claims similar to those of 23andMe: “using the power of DNA and the most comprehensive database of indigenous African genetic sequences in existence, African Ancestry is the ONLY company that can trace your ancestry back to a specific present-day African country of origin, and often to specific African ethnic groups dating back more than 500 years ago” (African American)[8] . The webpage also grapples with the potential “issue” that “if the results are from another continent, that information will be provided” (African American). In a similar manner to 23andMe’s special outreach to those of “mixed ancestry,” African Ancestry presents this “other” as a kind of less equal or less valuable point of difference.

Keeping in mind African Ancestry’s claim that “with the industry’s largest and most comprehensive database of over 30,000 indigenous African samples, African Ancestry determines specific countries and—more often than not—specific ethnic groups of origin with an unrivaled level of detail, accuracy and confidence [9],” I listened to J describe the grand reveal of the test results to me (African Ancestry): “…in one case we had one student whose family…because he was from Tracy, California… his entire family came to see what the reveal showed… and, in another case, one of the students who, of course definitely thought he was going to trace back to Africa, traced back to Norway and some places like that. He is the one that traced to a European country… Then another student…named  G… G is by all accounts African-American even though he has an African name. It was very important to him to see which country he was going to trace back to, and it was actually to a country in Africa and he was planning on going and visiting it, but I don’t know if he ever did…”

J recalled a student’s response to his results: “M was very surprised, he thought black community was where he traced backed to. He was very active in the community. I remember we were going to take to take a picture with Gina at the end and M stepped out in front and said “I’m asserting my white privilege right now…” it was kind of funny.”

Of those who got tested J described how “for some it brought a peace that they can now say here is really where I come from and I am a descendent of slaves and there is a connection.” J also took a test her self, “I also took the test and was surprised that I was not more emotional about it. I think I was expecting more of the full on “I want to go visit” and it didn’t really strike me that way because I know who I am. I’ve been to the plantation that we’re from. I’m into being a descendent of slaves.”

Interestingly, when asked if Gina Page had offered any background on the nature of the tests before giving the participants their results, J concisely mentioned, “she [Gina Page] talked about mitochondrial and DNA and lineage from mother and father…. I don’t remember all of the things about it. You can check out their website… AfricanAncestry.com…but she [Gina Page] did do a bit of a feel on “here is the science of this”… you know who you should maybe reach out to? There’s an anthropology professor here who deals with these things… Duana Fullwiley…yes, Duana Fullwiley demystifies and debunks this kind of testing.”

III. The Strand of “Empowerment” Unwoven

“Genetic ancestry companies appeal to both the already well-established hobby of genealogical research (family trees) and the increasing interest in “genetic origins”

– (Hamilton 2012: 267)

It is clear there is an aurora of excitement and zeal surrounding these direct-to-consumer genetic tests and more generally the emerging field of post-genomic research. In the garden of a growing fetishization for science itself, genetic testing companies use glossy advertising and innovative webpages to mirror a language that aims to encourage individuals to empower themselves. Consumers are bombarded with vocabulary that seeks to give them a sense of agency and which seemingly places the power of science directly into their hands. The ability to constructively define one’s self and to truly know one’s self, all can be done for under $100 dollars, and with a simple cotton swab of the cheek. This woven fabric of genetic reductionism and determinism tries to make simple something that is inherently complex and in doing so whittles away individual and collective histories and stories. At the same time, these companies argue they can offer some “deep,” concise, and accurate knowledge. The product they market, however, disrupts and ignores other complexities: it has the potential to do enormous violence to individual and group histories. Jennifer Hamilton in “The Case of the Genetic Ancestor” writes “genetic ancestry tracing, with its attendant conceptions of biogenetic kinship, is being used to produce new configurations of politically and legally cognizable (a)filiation within a broader political economy of recognition” (Hamilton, 2012: 275). The conflation of biology with social and cultural constructions of identity is becoming increasingly commonplace.

Due to this, there is great danger in blind acceptance of the results of genetic testing, in assuming their infallibility. Society puts faith in researchers and in science to remain objective, rational, and logical, but science, like everything in life, is inextricably linked to the social and the cultural. Science is not necessarily linear; it has a pedigree to which non-linear elements make key contributions. The illusion of agency within the world of direct-to-consumer genetic testing is a myth. Yet, it continues to insert itself into the sculpting of human identity politics.

Works Cited

African Ancestry. “African Ancestry Trace Your DNA. Find Your Roots. Today.”African     

Ancestry Trace Your DNA. Find Your Roots. Today. N.p., n.d. Web. 17 Mar. 2014. <http://www.africanancestry.com/home/&gt;.

Casey v. 23andMe, case No. 13CV2847H

Hamilton, Jennifer. “The Case of the Genetic Ancestor.” Genetics and the Unsettled Past: The Collision of DNA, Race, and History. By Keith Wailoo, Alondra Nelson, and Catherine Lee. New Brunswick, NJ: Rutgers UP, 2012. 266-79. Print.

Lee, Sandra Soo-Jin. “Race, Risk, and Recreation in Personal Genomics: The Limits of  Play.” Medical Anthropology Quarterly (2013): N/a. Print.

23andMe. “Find out What Your DNA Says about You and Your Family.” 23andMe. N.p., n.d. Web. 15 Mar. 2014. <https://www.23andme.com/&gt;.

 

Footnotes

[1] All names and initials here, with the exception of one individual, are changed to for anonymity.

[2] An example of one of 23andMe’s “new innovative” technologies that can affect individual identity constructions.

[3] Times magazine

[4] While Paul was aware of the ongoing lawsuit, Zander was not.

[5] At the bottom of this same webpage is an advertisement featuring Henry Louis Gates Jr., who was the start of the PBS series “African American Lives.” This further magnifies the push by 23andMe to reach out to minority populations.

[6] The event at the themed house is an excellent example of how the community approach to marketing led to the community getting the tests done.

[7]Similar to 23andMe, African Ancestry offers a concise and vague description of its services.

[8] This is particularly interesting in comparison to 23andMe which claims to be able to help you “trace your linage back 10,000 years and discover your history from over 750 maternal lineages and over 500 paternal” (23andMe). This discrepancy highlights the discrepancy between veracity

[9] It is valuable here to think of the history of dispossession and colonization of Africa that makes it difficult or even arbitrary to make genetically distinct ethnic groups.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s