Spitting for Science: The Truth about DNA Testing and Privacy

Originally Published August 4th, 2017 · Updated September 8th, 2018

In late October 1997, the film Gattaca was released and quietly flopped at the box office. The dystopian-future sci-fi film tells the story of Vincent Freeman (Ethan Hawke), a product of old-fashioned conception, who goes to great lengths to hide his flaws from his genetically-engineered peers.

In Vincent’s world, the DNA of every citizen is stored in a giant database. A social structure emerges, relegating those of natural birth to subordinate positions, while promoting the genetically-modified to stations of wealth and authority.

It’s twenty years later, and thanks to the growing use of at-home DNA saliva tests, Gattaca has a newfound relevance. Recent articles cite the film as a prophetic vision and criticize companies like 23andme for creating DNA databases that may be used for nefarious purposes.

While the threat of losing our most personal information, our genetic code, is quite real, private DNA companies are not the enemy. Contrary to popular opinion, the best way to regain ownership of your DNA is to acquire your data from a private testing service, because like it or not, the government already has it.

As predicted, it is now possible to test embryos1 for fatal genetic disorders.2 With a few drops of saliva, a DNA sequencer can figure out the color of your eyes, hair, and skin.3 You can also find out if you hate cilantro4 without even tasting it, or if eating asparagus will make your urine smell bad.

With the help of industry-leader 23andme and other independent research groups, we may soon be able to predict the onset of diseases and identify which medications will be most effective at treating them. Right now, 23and me is conducting a study of 25,000 research participants in what could be the most intensive study ever of bipolar disorder.5

Note: I wrote the first draft of this article in August 2017. In October 2018, after recommending 23andme to so many people, I chose to add an affiliate link to my sidebar. I was not paid to write this article, and all opinions are my own. 

This technology doesn’t only apply to medicine. With the help of DNA and ancestral databases, adoptees can find birth parents and biological relative much more easily than they could a decade ago. Genealogists can use the data to verify branches in a family tree. Anthropologists can draw more precise conclusions about ancient societies. However, Luddites and technophiles alike are warning against the use of this technology.

Should we be afraid?

Scientific American calls 23andme “terrifying”, citing potential privacy issues.6 A New York Times opinion piece by the executive director of the Center for Genetics and Society claims that DNA data should not be in the hands of a privately-held company, but instead handled solely by the government and associated nonprofit organizations (like the Center for Genetics and Society, perhaps?).7 They have suggested that by voluntarily sharing your DNA via saliva sample, aka, “spit kit”, you are signing away the rights to your most personal information.

Consumers are understandably concerned, because this data in the wrong hands can open the door to a host of negative consequences. What if insurance companies use this information to refuse coverage or raise premium? What if employers refuse to hire people who don’t meet specific genetic criteria?

What if Anne Wojcicki, co-founder and chief executive officer of 23andme, is secretly building a Neanderthal army? These are mostly valid questions, but they ignore a very important fact.

The government already has (most of) your DNA.

Even if you haven’t taken a DNA test. It doesn’t matter. if you have had children in the past few years, the government has your DNA.8 Per the ACLU:

The DNA of virtually every newborn in the United States is collected and tested soon after birth…Today it is increasingly common for states to hold onto these samples for years, even permanently. Some states also use the samples for unrelated purposes, such as in scientific research, and give access to the samples to others.

Without getting too far into the technical details of genetic recombination, it can be simply stated that a baby gets 50% of its DNA from each parent. Though the exact amount inherited from grandparents can vary, it’s about 25%. Similarly, a baby will share 25% of its genetic makeup with half-siblings, aunts, and uncles. If a person shares half or 1/4 of your DNA and they’re in a federal database, you might as well be on there, too.

Even if you don’t have children, your data is still out there.

Just ask the brother of the ‘Grim Sleeper’, aka, Sacramento’s ‘Roaming Rapist’.

Police became frustrated, unable to identify him even though they had his DNA from the crimes. Desperate for a break, they checked a database of convicted felons, but came up empty-handed.

Finally, they searched for a partial match to see whether he had a relative in the database. They got lucky — the man had a brother in custody, which led authorities to the assailant.

The “Roaming Rapist” is one of a handful of cases that California authorities have quietly solved in recent years using a controversial technique that scours an offender DNA database for a father, son or brother of an elusive crime suspect.9

And even if you aren’t a felon with a CODIS (Combined DNA Index System) profile, your genetic data is still out there. Grim Sleeper and his brother share about 50% of their DNA, but they also share a very special kind of DNA that is carried only by men. Called Y-DNA, this code is passed nearly unchanged from father to son, generation after generation.

Any direct male descendant of the Sleeper or his brother, from now until the end of human history, will carry this identifying code. Although Y-DNA is primarily used to study migration patterns of ethnic groups and to follow paternal surnames back several centuries in tandem with genealogy studies, it is still a form of DNA that is widely collected and shared.

And sure, the type of DNA data used by CODIS (STRs, or short tandem repeat) isn’t the same as other types of DNA tests (SNPs, or single nucleotide polymorphisms), but for the purpose of this article, I’ll be lumping them all together as personal genetic data. This article explains the difference between the two.

The government wants more DNA.

Back in January 2015, Barack Obama unveiled the Precision Medicine Initiative, a plan to collect and study large amounts of DNA obtained from volunteers.10 Initially earmarked as a $215 million expense under the National Institutes of Health (NIH), the initiative aims to collect genetic samples and corresponding medical history data from at least one million Americans.

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  1. https://blogs.scientificamerican.com/brainwaves/are-we-too-close-to-making-gattaca-a-reality/
  2. https://www.acog.org/Patients/FAQs/Prenatal-Genetic-Screening-Tests#first
  3. https://dnacenter.com/blog/new-dna-test-predicts-eye-color/
  4. http://www.npr.org/sections/thesalt/2012/09/14/161057954/love-to-hate-cilantro-its-in-your-genes-and-maybe-in-your-head
  5. https://www.23andme.com/depression-bipolar/
  6. https://www.scientificamerican.com/article/23andme-is-terrifying-but-not-for-the-reasons-the-fda-thinks/
  7. https://www.nytimes.com/roomfordebate/2015/03/02/23andme-and-the-promise-of-anonymous-genetic-testing-10/23andmes-dangerous-business-model-17
  8. https://www.aclu.org/other/newborn-dna-banking
  9. http://www.latimes.com/local/lanow/la-me-familial-dna-20161023-snap-story.html
  10. http://fortune.com/2015/01/30/obama-launches-dna-data-drive-to-revolutionize-disease-treatments/

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