Getting to Know You: The Power Direct-to-Consumer Giants Have to Understanding Our Genetics

After going back and forth for what felt like years, my curiosity won. I ordered the test and shipped off my sample. Three weeks later, the email arrived in my inbox. I logged into my online portal, scrolling past the bolded message informing of my “slightly increased risk” of Alzheimer’s Disease, instead, narrowing in on what I was looking for: how would 23andMe explain genetic risk alongside my results?

In theory, genetics offers an elegant, linear way to predict one’s future—setting up a narrative in which having “the Alzheimer’s gene” destines one to a very specific medical fate. The realities of genetics, however, are far more complex. Environmental factors, among others, mediate gene expression and diseases are usually the result of various (often unidentified) genes working together. Even considering Alzheimer’s, a disease with highly penetrant variants, my risk remains probabilistic, not destined.

And yet, simple linear narratives persist in lay conceptualizations of genetics, and in a world with constant exposure to direct-to-consumer (DTC) advertising—it’s no surprise.

23andMe floods the airwaves with ads painting genetics as deterministic, a unique form of self-knowledge that offers a definitive window into the past, present, and future—and with it, unique insight into “what makes you, you.” But, designed to sell products, their ads aim to commodify genetic identity, not accurately convey the complexities of genetics.

This tension of (mis)information demonstrates how DTC companies toy with our understanding of genetics. How can we expect consumers to accurately interpret their results while inundated with narratives designed to sell genetic identity opposed to adequately inform?

Though a commercial product, 23andMe enters the medical sphere by offering genetic health information—information of the sort which, up until their test hit the market in 2013, remained in the purview of physicians paired with genetic counselors. This symbiotic relationship guided patients through both interpreting their results (namely protecting against misinterpretation) and the informed consent process—a process designed to protect autonomy by ensuring patients understand their rights and any potential risks.

While 23andMe transplants genetics from the hospital to the marketplace, principles of informed consent still apply—as do concerns of misinterpretation. Upon purchase, consumers sign a privacy and terms of service agreement and a consent document. And with their results, the company attempts to communicate the uncertainty inherent in genetic risk with a brief tutorial. But per the FDA, the informed consent process begins with advertising. How can 23andMe ever satisfy informed consent if they consistently undercut any attempts to accurately explain genetic risk with marketing schemes designed with an entirely counter message in mind?

Even free from the intricacies of genetics, conceptualizing risk is inherently complex. Risk of disease, risk of recidivism, risk of rejection—it’s a universal calculus—yet one at the whims of narrative influence.

23andMe might “objectively” report my numerical risk for Alzheimer’s but applying that percentage to my life requires a way of translating the uncertainty risk implies—a necessarily subjective feat beholden to the social narratives we use to interpret the unknown. Relying on different social narratives leads to vastly different understandings of risk’s uncertainty, and the narratives 23andMe constructs in order to sell their products run counter to the complex reality and probabilistic nature of genetics.

Biologists have long known that DNA does not definitively determine physical or mental health, let alone identity. Nevertheless, “the deterministic model that genes alone define biology has become the prevailing paradigm,” according to the Council for Responsible Genetics. While a linear understanding of causality is not in and of itself problematic (some genes do exhibit this model), advancements in genetics demonstrate that most mechanisms of gene expression are far more complex and involve multiple genes working together—especially those implicated by 23andMe’s genetic health reports.

Despite this scientific reality, DTC companies continue to embrace a model that paints genetics as a deterministic answer to questions of health, identity, and destiny—constructing a world where your genetic code tells you everything you need to know about yourself.

23andMe marketing campaigns capitalize on this sentiment, playing on our desire for self-understanding by selling an identity rooted in our genes. But in order to access that self-understanding, consumers must, in turn, play into 23andMe’s deterministic narratives, as their results cannot be self-knowledge if they may never materialize (at least not in the ways 23andMe suggests). The company deploys specific marketing strategies that frame the question of identity as genetically determined, strategies seen throughout their ads which feature identity center stage.

One 23andMe commercial, which played across my screen enough for me to still remember its melody (and one the company recently “unlisted” on YouTube), depicts a woman’s journey as she explores her newfound genetic heritage. Titled “A Journey Through Your DNA,” Nicole dances around Africa as the screen shows “46% West African,” she explores Vietnam with her “29% East Asian” result, and floats in the Dead Sea alongside her “12% Middle Eastern” report. All the while, a woman sings “getting to know you” in the background.  The ad ends with a line almost as memorable as its melody: “know how your DNA connects you to the world by knowing more about you and the 23 pairs of chromosomes that make up your DNA.”

While this spot focuses on the company’s ancestry testing opposed to their genetic health services, it depicts genetics as self-knowledge, a message consistent throughout 23andMe advertising.  Another spot, this one selling the company’s original “Personal Genome Service” (a test involved in a contentious FDA battle before it was finally re-approved for market sale), also melds genetics and identity.

The ad begins with a woman addressing her 23andMe profile and stating, “this is me: my DNA. It makes me who I am… Every piece is important, like a self-portrait,” and goes on to detail why: how users will discover valuable information about themselves—information such as which disorders they might pass down to their children and which foods to avoid. The 90 second advertising, again, grounds identity in genetics: stating, “the more you know about your DNA, the more you know about yourself.” The ad concludes with the words “LIVE in the KNOW” (below) flashing across the screen, as, per the company, nothing reveals more about who you are than your DNA.

Throughout their advertising the company manufactures a desire for self-knowledge, using rhetoric that both evokes a falsely deterministic understanding of genetics and creates a sense of need that can only be satisfied by 23andMe’s product. After seeing ad after ad depicting exactly that on my Facebook feed, Instagram, and TV—ads likely responsible for me purchasing the test— it’s hard to argue that such incessant priming doesn’t impact how I view my subsequent results. How does that not compromise my informed consent by nudging me towards viewing genetics in a deterministic rather than probabilistic light?

Upon returning their results, 23andMe backtracks. They acknowledge outside factors also influence disease risk, emphasizing the probabilistic nature of their health reports. Yet, their 11^th hour narrative shift isn’t enough. Without returning to 23andMe’s original narratives, how I identify with my “slightly increased risk” for Alzheimer’s becomes significantly less clear. At that point, am I not already primed to view genetics deterministically in order to access the self-knowledge I was sold?

This post is part of a digital symposium hosted by Bill of Health in conjunction with the Petrie-Flom Center’s 2019 Annual Conference, “Consuming Genetics: Ethical and Legal Considerations of New Technologies.”

Read the rest of the symposium!

Clio Sophia Koller is an MBE candidate in Bioethics at the Harvard Medical School Center for Bioethics.