As an avid STEM enthusiast interested in genetic research, I am all for using the genome to predict and treat illness, although, I have one caveat: Genome sequencing must be used in a medical setting. While its innovativeness and availability make it appealing as a consumer product, the widespread sequencing of genomes in a privatized manner by companies such as 23andMe should be stopped.
All the credit to their marketing team for making a sleek, compact package with bright colors and graphics to lure in consumers, including children: My 8-year-old cousin asked for a kit for her birthday. Eight. When I was eight I asked for rollerblades and a Nintendo DS, I had no idea what genetic testing was. 23andMe’s website even features bright pictures of happy people holding ice cream. I’m sorry, but if I were reading the results of their testing, I’m not sure I’d be jumping for joy.
Let me get this straight: I don’t think their ancestry testing is nearly as bad as their “Health + Ancestry Service.” Knowing your heritage can be a good step in learning about yourself and your family. But the health screenings present ethical and potentially under-the-table legal issues.
First, 23andMe does not make it abundantly clear that its tests are just a “suggestion” and not a diagnosis. The company only specifies this clarification in minuscule print in a large paragraph at the bottom of an informational page — not even the front of the website.
“The test is not intended to tell you anything about your current state of health or to be used to make medical decisions, including whether or not you should take a medication, how much of a medication you should take or determine any treatment,” the paragraph reads. “These carrier reports are not intended to tell you anything about your risk for developing a disease in the future, the health of your fetus or your newborn child’s risk of developing a particular disease later in life.”
This would be a valid rebuttal if it weren’t so hidden. Almost anyone who buys a kit and reads its results will believe them to be true and will likely panic when their results tell them something like “you are at high risk for developing late-onset Alzheimer’s.” I know I would be afraid for my future if I found out something like that.
Presenting our sensitive medical data as such creates a fear-based atmosphere for consumers. Customers must consider whether or not to seek treatment to get ahead of these diseases or wait and hope for the best. Which is better? No one will know for sure unless they fall ill.
Finally, 23andMe holds onto its consumers’ genetic data and doesn’t fully explain what it will do with it after it sends you your initial results. An excerpt from their Biobanking Consent Document explains the exact parameters of this further.
“Unless we notify you otherwise, we will store your sample for a minimum of one year and a maximum of 10 years at our CLIA-certified laboratory,” 23andMe’s website reads.
What could they possibly need my DNA for after I have no use for it? 23andMe claims it will always ask for consent before research or transferring data to third-party organizations, including the federal government. But can we really know our data isn’t being distributed to third parties including the federal government? The government should theoretically be the one policing large organizations, but if it is in their benefit to let lapses in privacy slide, who’s to say they won’t play along? In this case, the government could potentially be amassing a database of its citizens’ biological data.
If you have ever read 1984 by George Orwell, we might be in for deja vu in the realm of privacy. If you haven’t, well, ignorance is bliss.
Contact Maddie Dailey at maddied ‘at’ stanford.edu.