The Blurred Lines of Genetic Data: Practicality, Pleasure and Policing
A new rumor is spreading that Apple may be leveraging its ubiquity to encourage iPhone owners to participate in DNA testing, perhaps to bulk up the medical data-collecting capabilities of its ResearchKit.
According to Antonio Regalado at MIT Technology Review, Apple will work with academic partners to collect and test the DNA, and may provide add-ons such as the ability to widely share genetic information directly from an iPhone with a single swipe.
This wouldn’t be the first time genetic researchers have tapped into social networks to recruit participants. University of Michigan’s Genes for Good project is using a Facebook app to encourage 20,000 volunteers to share information about their genes, health, habits, and moods to help the researchers uncover new connections between genetic variants, health, and disease.
Others are involved, too. There’s Google (with its genomic data cloud storage), 23andMe (with its $99 direct-to-consumer / direct-to-drug companies spit kit), and the United States Government (with its precision medicine initiative).
On one hand, it is hardly shocking that Apple would join the trend towards so-called open-sourcing DNA, or want to add genetic data-collection to its increasing selection of quasi-medicalized self-quantifying tools.
On the other hand, it could be smarter for Apple to sit this one out. 23andMe has been struggling to maintain relevancy since the FDA ordered the Silicon Valley-based company to stop providing genetic health information after repeated failures to prove its analytical or clinical validity. Moreover, patent infringement lawsuits are ongoing at various companies. And shocking stories about the endless possibilities for DNA hacking (not to mention the more mundane concerns of workplace discrimination and increasing insurance premiums) are becoming more commonplace.
While Apple’s ResearchKit has been growing in popularity, it has also encountered serious problems – from user bias to inaccurate reporting – all of which can lead to misleading data and ultimately to wasted research funds and increased medical costs. Adding genetic information to the mix may only compound these problems. Our genomes contain so much data that distinguishing between signal and noise is a huge problem. And then there is the point made succinctly in a recent article about “Big Data” in The New York Times Sunday Review: “The things we can measure are never exactly what we care about.”
It is also unclear whether people will rush to share this most personal kind of data. It’s one thing to take action on social networks following DNA testing – say, to join a Facebook group to discuss a shared gene variant – but enabling widespread sharing of the genetic data itself may ultimately benefit biotech companies at your or your family’s expense.
A recent news story published in The New Orleans Advocate, and later covered by the Electronic Frontier Foundation, highlights the potential for genetic data shared for a particular purpose with a private company to later be used for familial genetic surveillance in the name of law enforcement.
Ancestry.com, which owns a trove of genetic data called the Sorenson Database, allowed Idaho police investigators to search through 100,000 DNA samples in their attempt to shed new light on a 20-year-old murder case.
The investigators found a DNA sample from a man that matched on 34 out of 35 alleles of DNA from the crime scene, indicating a close familial relationship. They then used the database’s genealogical information to track down all of the man’s family members. Subsequent Google and Facebook searches led them directly to his son, who turned out to be a filmmaker known for his depiction of gruesome murder scenes.
As it turned out, he wasn’t the murderer, and was able to establish that. But he got lucky. Given the proliferating use of trace DNA in forensics, the acceptable margin of error for genetic “matches” is a problem. If the original crime scene had only provided trace DNA, the evidence stacked against this guy may very well have ended in a conviction.
If widespread sharing of our genetic data is soon enabled by Apple, it may be smart to swipe left.
Previously on Biopolitical Times:
- Open-Source DNA
- How Should the U.S. Regulate Genetic Testing?
- From Suspects to the Spitterati: A collision of power, profit, and privacy
- Welcome to the “Genetic Panopticon”