What’s the price of your genetics?
Well, about $99 – according to 23andMe. Less than two decades after the human genome was fully sequenced, we now have on-demand, highly accurate companies – such as 23andMe and MyHeritage – giving us ancestry percentages down to a tenth of a percent [1]. This DNA market has exploded in popularity in recent years, doubling the number of DNA tests sold annually from 2017 to 2021 [2].
But after you get your results, your data doesn’t get erased. Instead, it gets amassed and stored – and remains forever tied with your name.
How is this possible?
Your genetics are as specific to you as leaves to a tree. If you hand someone only a leaf without the tree’s name, they could identify the species through the leaf’s unique characteristics (leaf branching pattern, color, size, etc..). Similarly, despite any anomizing layers put over the information on an individual’s genes, it is forever tied to only them through its unique sequence and structure. And due to these unique traits, it’ll always be inherently trackable.
Consider the case of the infamous Golden State Killer: a man who murdered 13 people and sexually assaulted another 50 – and, for decades – went unidentified [6]. How was this notorious serial killer brought in? Detectives first used DNA left at a crime scene to find individuals bearing a similar code. They then reconstructed a family tree to find related individuals matching the killer’s suspected height and sex; and, sure enough - 44 years after the last crime – police suspected a 72-year-old man, tested his DNA, and arrested him the next day [6]. Keep in mind that this criminal had never had his own DNA sequenced; it was simply due to relatives and two distant genetically-similar individuals that he became a suspect. Within this context, the enormous amount of DNA data available online served to catch one of the country’s most notorious criminals: a result most would agree is for the greater good.
But what if de-anonymizing someone’s DNA isn’t done for the ‘greater good,’ but for personal interests? Consider a teenager, who, using data from his Y chromosome and a few online websites, managed to identify and contact his deliberately-anonymous-sperm-donor father. This fifteen-year-old managed to sidestep, with the sheer amount of information online, all institutionally-set-up anonymity barriers aimed at protecting his father’s identity [7]. And this teenager didn’t even have a background in genetics. Is this still an ethically allowable use of genetic data? On the one hand, the son made amicable contact with his father. On the other hand, it went deliberately against the father’s recorded wishes and violated his legal protections, all while highlighting the lack of laws “protecting” this growing field.
Now, think of what an organized institution - such as the insurance field - could do with the same data.
Insurance companies operate in tension with their customers. On the one hand, the insurance company wants to insure those who have a lower likelihood of health concerns, as they want to maximize profit. The customer, on the other hand, wants to present themselves as being as low-risk as possible to attain the best coverage rate; therefore, there’s a betting game between the insurer and the insured to reach an agreeable price. Genetic data has a capacity to rig this ‘game’ severely in the insurance company’s favor. Certain genes can be tied to predispositions with diseases, late-onset health conditions, even behavioral inclinations [9, 10]. Using data online, insurance companies have the capacity to adjust your rates for conditions that you may be currently asymptomatic for. Even if you haven’t directly submitted your data online, companies can use those genetically related to you to guess at your genes. Legally, genetic information cannot be used to inform coverage or rate decisions. However, these laws (such as GINA, which aims to prevent genetic information descrimination) do not protect your genetic information from being calculated into your life insurance, disability insurance or long-term care insurance [8]. (Keep in mind that the tests that insurance companies currently analyze are typically of a medical variety, not your in-home ancestry test.) However, this is not for legal purposes, but rather accuracy ones [8]. As the accuracy of in-home tests increases at the rate they have, there are no preventative measures stopping an analysis switch to the world wide web. Many have voiced concerns over this, as companies would not even be obligated to inform on the results of their search should they find a concerning genetic predisposition.
In fact, genetic predispositions – vulnerabilities to certain diseases – have already been used against individuals. A sixth grader with gene-markers that made him vulnerable to cystic fibrosis was kicked out of his school, despite the fact that he wasn’t actively showing symptoms of the disease [11, 12]. Although this was the first case of removal from a school based on what-was-ruled-as genetic discrimination, it gives a concerning look into what a future of genetic discrimination and widespread genetic knowledge could entail.
Together, these cases illustrate some of the good and some of the alarming developments that come from so much genetic information being available online, and so much of it traceable to individuals. Laws are being called on to regulate this field – and with their implementation, they will decide what is ethical in the eyes of our courts. However, I would implore you to think on the concerns raised in these cases – after all, everyone’s genetics can be found to a certain degree online. And going into the future, nobody knows which genes will be considered ‘problematic’ – or who will possess them…Maybe you do.
Works Cited
23andMe. “DNA Ancestry Test, Find DNA Relatives.” 23andMe, https://www.23andme.com/dna-ancestry/?utm_source=google&utm_medium=search_generic&utm_campaign=US_evergreen_sales_prs_beta&gclid=Cj0KCQjwtrSLBhCLARIsACh6Rmj1VATXitasdIO0pSlsCXyI2kjy4AURpwbhr4o5C3FscyMEYKbcPvYaAjXhEALw_wcB&gclsrc=aw.ds&sub=ver2.
“Free Review of Ancestry DNA Tests: Genetics Digest.” Free Review of Ancestry DNA Tests | Genetics Digest, https://geneticsdigest.com/best_ancestry_genealogy_dna_test/indexc.html?gclid=Cj0KCQjwtrSLBhCLARIsACh6RmgI8KOH_36Q-xqQcYxrjUbn5Zmh3E6sEB6PkQJQbVJ54O5N1pZEffgaAjcEEALw_wcB.
Hussain, Saira, and Jennifer Lynch. “Genetic Information Privacy.” Electronic Frontier Foundation, https://www.eff.org/issues/genetic-information-privacy.
Loos, Ruth J. F. “15 Years of Genome-Wide Association Studies and No Signs of Slowing Down.” Nature News, Nature Publishing Group, 19 Nov. 2020, https://www.nature.com/articles/s41467-020-19653-5.
Hong, Eun Pyo, and Ji Wan Park. “Sample Size and Statistical Power Calculation in Genetic Association Studies.” Genomics & Informatics, Korea Genome Organization, June 2012, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480678/.
Jouvenal, Justin. “To Find Alleged Golden State Killer, Investigators First Found His Great-Great-Great-Grandparents.” The Washington Post, WP Company, 2 May 2018, https://www.washingtonpost.com/local/public-safety/to-find-alleged-golden-state-killer-investigators-first-found-his-great-great-great-grandparents/2018/04/30/3c865fe7-dfcc-4a0e-b6b2-0bec548d501f_story.html.
“Health | Boy Tracks His Sperm Donor Father.” BBC News, BBC, 2 Nov. 2005, http://news.bbc.co.uk/2/hi/health/4400778.stm.
Huddleston, Cameron. “Can Life Insurance Companies Get Your Genetic Test Results?” Forbes, Forbes Magazine, 20 May 2021, https://www.forbes.com/advisor/life-insurance/genetic-testing/.
Sugrue, Leo P. “How Well Can a Genetic Test Predict Your Future Health?” Scientific American Blog Network, Scientific American, 4 Apr. 2019, https://blogs.scientificamerican.com/observations/how-well-can-a-genetic-test-predict-your-future-health/.
Boundless. “Boundless Psychology.” Lumen, https://courses.lumenlearning.com/boundless-psychology/chapter/genetics-and-behavior/.
Staff, The Week. “The Boy Kicked out of School for Carrying a Cystic Fibrosis Gene.” The Week, The Week, 8 Jan. 2015, https://theweek.com/articles/471209/boy-kicked-school-carrying-cystic-fibrosis-gene.
Zhang, Sarah. “DNA Got a Kid Kicked out of School-and It'll Happen Again.” Wired, Conde Nast, 1 Feb. 2016, https://www.wired.com/2016/02/schools-kicked-boy-based-dna/.