The Genetic Collection Network

-- By ShayaAfshar - 05 Mar 2017

“As gene tests become common, possibilities for abuse will intensify. Banks might not offer you a mortgage if you were likely to die before it was paid off... Politicians might dig up dirt on their rivals... How far should law enforcement be allowed to go? Should prosecutors be allowed to subpoena a company’s DNA database of thousands of people if they suspect it contains a match to a crime suspect?” – Kashmir Hill

The Genome Unpacked

After the completion of the Human Genome Project in 2003, which located and identified the genes within all 23 human chromosomes, private innovation emerged. Companies like 23andMe and Ancestry.com formed, promising to use the biomarker information collected from their consumer genetic test kits to serve a number of purposes, from assessing disease susceptibility prior to the onset of symptoms, to facilitating a more precise diagnosis through identification of disease subtype, to mapping one's ancestral genetics. This information, inextricably connected to one’s being, differs in a substantial way from most other identifying information: it cannot be changed.

There is little doubt that the common internet user divulges too much of his or her identity while connected to the web. Banking data, electronic communications, usernames, and a multitude of other identifying factors are at risk when a user does not properly protect himself on the internet. But most, if not all, of these identifying factors can be changed. If you are a victim of fraud, your social security number can be changed. If your banking information has been compromised, your account can be closed and stolen funds will be reimbursed by the bank. You cannot, however, change your genetic information. Once it has been accessed or compromised, your genetic identity can be used against you by state and non-state actors alike.

This genetic information would essentially amount to a “Holy Grail” for the healthcare industry, and it is therefore no surprise that data companies like Google financially back genetic ventures like 23andMe. The potential for targeted marketing, much in the same vein as Google has used its search data, is a highly realistic possibility if not an inevitability. It is no stretch of the imagination, then, to understand that like our internet data, our genetic data would not just be in the hands of marketers but also in the hands of governments. Already, law enforcement has used Ancestry.com to compare genetic information found at a crime scene with the Ancestry.com database to track down another suspect who was later determined innocent. The Electronic Frontier Foundation called law enforcement’s actions in this situation a “wild goose chase” that demonstrated “the very real threats to privacy and civil liberties posed by law enforcement access to private genetic databases.”

Laws Will Not Save the Genetic Collection Network from Its Inherent Dangers

To begin, even if laws specifically regulated what services like 23andMe did with their users’ genetic information, they would never fully mitigate the absolute risks involved with converting your genetic information into shareable computer data. Indeed, the Genetic Information Nondiscrimination Act, the only statute that 23andMe makes reference to on its website, is only useful to guard against insurers and employers.

The Fourth Amendment of the U.S. Constitution prescribes individuals the right “to be secure in their persons, houses, papers and effects," explicitly prohibiting unreasonable searches and seizures and requiring a judicially sanctioned warrant to be supported by probable cause. The only somewhat relevant case to date is the Supreme Court's 2003 case Maryland v. King. In that case, police seized an arrestee's DNA via a cotton swab inside his cheeks, which was then deposited into a government DNA bank. The Court stated that the search was reasonable because it was minimally intrusive to the arrestee and the information obtained from the DNA would help the government interest in solving and preventing crimes. Law enforcement, therefore, can collect DNA at a crime scene, but the Fourth Amendment restricts this seizure to defendants in criminal cases. The courts have not yet ruled on the privacy issues behind genetic testing websites.

The Only Way to Prevent the Spread of Your Genetic Information Is Abstinence

Ultimately, there are no legal or technological safeguards that will entirely protect your genetic information. There is little regulation of what companies can and cannot do with users’ genetic data. Users essentially sign away any recourse to prevent 23andMe from using their genetic data as it pleases. Thankfully, genetic collection is an entirely elective endeavor. Just as you are not compelled to divulge immense identifiable information by creating a Facebook account, you do not need to subscribe to services like 23andMe and make available your entire genetic makeup to anyone sophisticated enough to obtain it. But even a Facebook account can be carefully tailored by its user to only include pseudonymous information; the voluntary entrustment of your genetic information to a private company is an all-or-nothing proposition, and these companies either have all of your genetic data or none of it. This information can only become shareable information connected to the internet if you yourself decide it to become so.

If one is concerned about one’s privacy, membership in services like 23andMe should be a nonstarter. Regulations can only go so far: putting your genetic information on the internet leaves it vulnerable to a privacy breach, period. While I am sure 23andMe puts great care into its privacy, if only for liability reasons, it remains to be seen how this sort of information will be used in the future. If you—like many people in the legal profession—monitor and limit what you say on the internet, then entrusting your genetic information to a third party should be completely off limits.