Roosevelt Institute | Cornell University

Don't Unzip My Genes!

By Kayla ZhangPublished June 30, 2020

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With the advent of information technology, we find our privacy increasingly encroached upon via the collection of our personal data online. But there is far too little focus on the massive genetic surveillance also taking place in the United States, especially through genealogy corporations such as 23andMe.

        The fireplace snapped with the sound of escaping embers, and my family and I huddled around in blankets, getting ready to open our holiday gifts. I rubbed my hands together, cold and excited, and gazed with rapt attention at the present I had received from my sister; it sat quietly, an unsuspecting little rectangle of paper wrap. I grabbed it and tore off the packaging, excited to finally see my new⁠—23andMe saliva collection kit?  

        On October 4, 1951, a pivotal discovery was made in the field of medical research: that of “immortal cells,” or cells that could be grown outside of the donor’s body. Henrietta Lacks, an impoverished African American woman and mother of five, had been swept up in the tides of the Great Migration and struck down with a diagnosis of cervical cancer. She died at Johns Hopkins Hospital in Baltimore, Maryland—but not before her cells, cancerous and healthy, were collected without her permission by an attending physician, Dr. Lawrence Wharton Junior. They were then given to Dr. George Gey, a biologist searching for cells that could survive and grow in vitro for extended periods of time; the cancerous cells were able to do just that. They were physiologically “normal” enough for medical experiments yet sturdy enough for experiments testing the cellular effects of extreme conditions such as zero gravity and nuclear fission radiation. For the next twenty odd years, Lacks’s harvested “HeLa” cells would contribute to numerous medical discoveries and innovations without her family’s knowledge, such as Jonas Salk’s development of the polio vaccine in 1953. The cells are now sold for 200 to 10,000 dollars a vial, but none of that money goes to Henrietta Lacks’s family, who ironically cannot afford health insurance. Lacks’s genome was even published, compromising her family’s genetic privacy.

        While the HeLa cell line revolutionized cellular biology and contributed to astonishing discoveries, it was obtained without the consent of Lacks or her family, which raises some intriguing questions: what are the boundaries when it comes to preserving genetic privacy if the data is being used to promote health research, and more importantly, why does it matter?

        Today, for-profit genealogy companies are uncompromisingly selling consumers’ genetic information to pharmaceutical companies. In 2015⁠, 23andMe signed a deal with Pfizer, giving access to analyses of all consumer genetic info regardless of whether or not they gave consent.

        23AndMe promises to strip all data of identifying information and combine data from different users to “minimize” the possibility of exposing an individual’s info, but 23andMe board member Patrick Chung admits that “The long game here is not to make money selling kits...Once you have the data, [the company] does actually become the Google of personalized health care.” Much like researchers used Henrietta Lacks’s cells in the 1950s without informing or paying her family, modern genealogy companies are using consumers’ genetic information to build vast databases without obtaining consent or compensating them (they are, in fact, profiting immensely off the sale of their test kits) and are releasing analyses to pharmaceutical companies at the risk of compromising individual (if you have personal knowledge of a person, you can still track down his or her DNA out of a dataset) as well as “national” genetic privacy. 

        In 2017, 23andMe CEO Anne Wojcicki claimed that she envisioned technology wherein a consumer could input his or her genetic information and see predispositions to health conditions and “natural aptitudes” for athletics or certain academic fields, a notion eerily similar to the plot of the 1997 science-fiction film GATTACA.

        The problem is less that people could be identified by their genetic information (modern laws such as the Health Insurance Portability and Accountability Act and Genetic Information Nondiscrimination Act are strictly enforced to prevent publication of and discrimination based on “individually identifiable health information”), and more that large pharmaceutical companies⁠—the only ones that have the money to buy this kind of data from a successful genealogy company⁠—are going to have access to DNA profiles that could represent the entire population of the United States, and that they could use this information to raise prices on certain medications that could be needed more in coming years and target advertising towards people deemed susceptible to certain health conditions. Jose-Carlos Gutierrez-Ramos, Senior Vice President and Head of the BioTherapeutics Research Group at Pfizer, emphasizes that the “expanding collaboration with 23andMe provides access to a wealth of data” that will allow them to expedite treatment development for “the right patient subpopulation.”  

        Companies such as 23andMe are clearly not going anywhere: in 2013, 330,000 people ordered genealogy tests from the major testing companies (Ancestry.com, 23andMe, MyHeritage, and FamilyTreeDNA). In 2017, that number had risen to 1,875,000. By 2018, the total number of people tested had skyrocketed to 12,275,000—more people purchased tests in that year than in all the prior years put together. This is probably attributed to an increase in advertising: Ancestry.com alone spent $109 million on advertising in the US in 2016.  MIT Technology Review estimates that by 2021, commercial genomics companies could have data on the DNA of more than 100 million people.

         “Privacy is the handmaiden of autonomy,” assert Calvin Ho, Assistant Professor of the Centre for Biomedical Ethics at the National University of Singapore and Terry Kaan, Faculty of Law at the National University of Singapore in their book on the ethical and legal aspects of genetic privacy. An issue as intricate as genetic privacy, especially as it relates to large-scale genomic surveillance, requires an equally intricate response, and it is not one to disappear over time.