Loss of Privacy to Eugenics, Giving Away Your DNA is No Joke

Published: Apr 7, 2023  |  

Assistant Professor (Communication Studies) at San José State University

The recent panic over the now infamous Chinese Spy Balloon prompted a Saturday Night Live cold open where Bowen Yang, impersonating the balloon, mocked America’s concerns about privacy, noting how we voluntarily give away our DNA to direct-to-consumer (DTC) testing companies just to find out if we’re, “like, 10% French.” It’s funny, of course. Not just because it’s true but because we all know it is but don’t care. Why? 

Plenty of reputable sources have published articles about the alarming privacy risks associated with DTC DNA testing, including data hacking and data sharing with law enforcement and third-party companies, as well as concerns about the legal gray area around genetic privacy and discrimination. Despite these dangers, the AMA estimated that nearly 100 million Americans, approximately 30% of the population, had undergone testing by the end of 2021.

 As a professor of health communication at San José State University, I have researched the persuasive strategies used by DTC DNA testing companies to conceal their faulty science and convince their customers to forfeit saliva in waves.

These companies promise unique and empowering insight into the human genome but the broader consequences of giving away DNA are largely unknown by consumers and not worth the risk. If privacy risks don’t concern you, you should consider the consequences of pseudoscience, lack of regulation and eugenics.

My own research on AncestryDNA™ shows how DTC DNA testing is often the scientific equivalent of a horoscope. It can offer you generalized insight that feels personal but is actually so broad that it becomes meaningless. Sense About Science warns consumers that the science behind individual genetic ancestry tests is unsound.

Genetic ancestry is based on whole populations during a period of hundreds of thousands of years, which means that any attempt by a DTC DNA company to trace individual ancestry will be inconsistent and incomplete. 

DTC companies compare customer DNA to samples of contemporary groups of people living in broad geographic regions, which obscures complicated histories of ancestry. Thus, the information they package as objective proof of ancestry is actually selective, inaccurate, and misleading.

 Though health and lifestyle DTC DNA testing, such as disease risk, promises more valuable personalized information than genetic ancestry testing, it comes with similar problems and limitations. DTC DNA tests cannot definitively predict disease, they can only alert consumers to increased risk. At best, these reports recommend vague health and lifestyle changes like exercising, which consumers find unhelpful.

At worst, they perpetuate a culture of overtreatment, in which people receive medical treatment for conditions that are not yet, and may never, become life threatening or cause symptoms. Overtreatment is an increasingly common phenomena, accounting for 30% of healthcare costs, which leads to worse health outcomes and increased financial burden.

 Even in cases where health-related DTC DNA tests might provide potentially life-changing information, most consumers are not equipped to receive this information on their own.

The DTC model cuts out doctors and insurance companies from the process of collecting and communicating health information. Though this can expedite the DNA testing process, make it more affordable for some and keep sensitive medical information out of official records, it also means that DTC companies are not required to follow the same protocols for delivering sensitive health information.

A lesser understood consequence of DTC DNA testing is the perpetuation of genetic determinism—the idea that genetics determine everything about an individual, including personality, intelligence, race, sexuality, etc. DTC DNA companies sell the idea that culture, health and lifestyle can be determined, interpreted and understood in purely genetic terms. 

While this is appealing in its simplicity, even scientists agree that phenomena such as race/ethnicity and ancestry are “weak proxies for genetic diversity” and should instead be understood as political and social constructs. Similarly, we know that health and lifestyle are not determined exclusively by genetics but are largely impacted by social determinants. 

Genetic determinism is also the unfounded belief that underpins eugenics—the manipulation of human populations to weed out genetic characteristics judged undesirable. Historically this has been used to justify racism and ableism. The more people contribute their DNA to genetic databases, the more they are literally and figuratively buying into the unsound logic that perpetuates eugenic methods of population control, including sterilization and segregation.

In a world where genetics rule all, what is to stop governments and healthcare organizations from influencing who can reproduce with whom and who should live and die on the basis of racist and ableist assumptions about what DNA is considered superior? We have to put a stop to it.

Ideally, governments should regulate DTC DNA companies and implement universal health care that provides more equitable and affordable access to genetic testing and prohibits insurance companies from denying benefits or increasing premiums on the basis of genetic test results.

However, these solutions require overhauling our free-market economy, which continues to face political roadblocks. So, until that day comes, I implore you to stop giving them your DNA.

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