DNA Privacy: Pressing Concern and Political Rallying Point

-- By CharlesRice - 13 Nov 2020

Introduction

Our DNA is the most fundamental information about who we are—it impacts our physical health, our development, and arguably our psychological predispositions. More than that, with the genetic data of one family member it’s possible to make inferences about the genetics of blood relatives. This includes those living, dead, and yet unborn.

The security of our genetic data— and the uses to which it can legally subjected— has taken on practical importance in the context of 1) a global economy increasingly fueled by personal data and 2) the emergence of companies that offer low-cost, direct-to-consumer (DTC) genetic tests.

Absent safeguards on the acquisition and use of this information there are both immediate and long-term risks to equality, freedom, and human agency. As the Parasite with the Mind of God’s appetite for data grows, and our ability to discern useful insights from expanding indexes of genetic information improves, it’s imperative that we address DNA privacy. Moreover, proximate concerns around the use of genetic data present an opportunity to bootstrap political focus to address broader privacy issues.

Rise of DTC Genetic Testing Companies

While their meteoric rise has been hard to track perfectly, estimates suggest that DTC genetic testing companies had tested more than 26 million people as of 2019. Their business model is fundamentally reliant on exploiting the genetic data they collect. In the long term, DTC companies expect that there will be future, profitable uses for this data (i.e. developing new drugs). In the short-term, however, the main revenue stream comes from the sale of genetic data to third parties. These companies retain broad ownership over the genetic data they collect, including the right to maintain your genetic data in perpetuity (the ultimate right to be forgotten).

Disturbingly (if unsurprisingly) very few customers understand what they’ve given away when they purchase an at home genetic test. In 2016, only a third of the 86 existing DTC genetic companies provided sufficient explanations to customers on privacy and the permitted uses of their genetic information.

Immediate Threats

Even if you haven’t shared your DNA results online, it’s likely a family member has. As a result, we are rapidly approaching a universal DNA database. Studies suggest that 60% of white Americans could be identified from an anonymous DNA sample through reference to public genealogy databases, and that this number will rise to 90% in only a few years. Nearly everyone’s genetic information is (or soon will be) available; this means nearly everyone faces the risk of this information being misused.

Widespread access to libraries of DNA data— created in part by DTC genetic companies but also national health ministries— have already led to high profile criminal arrests. The Golden State Killer was identified in 2018 when DNA found at a crime scene was matched to a relative’s DTC results uploaded to on a public genealogy website. In 2015, Sweden used a national DNA database to identify the assassin of Swedish Foreign Minister Anna Lindh a decade after her death. This should prompt chilling questions around law enforcement capabilities and civil rights.

Genetic discrimination, which is only now becoming technically feasible, could transform employment, access to healthcare, and other opportunities. Congress hoped that the Genetic Information Nondiscrimination Act of 2008 (GINA) would be “first civil rights bill of the new century of the life sciences.” While GINA does offer some protections (you can’t be denied employment or health insurance because a DNA test shows you face an increased risk of cancer) but also leaves gaping holes (you likely can be de denied employment or health insurance because a family member took a DNA test showing an increased risk of cancer).

For now, there are legal and scientific barriers to cloning and DNA experimentation; once sequenced, however, DNA information can be stored indefinitely. This should raise dystopian shivers. We’ll have to hope the protections against are improved upon rather than weakened over time. The experience of Henrietta Lacks suggests that if there are gaps in protection for our genetic data they will be exploited.

Bootstrapping Political Will

Most people fail to understand why the banal, day-to-day data they share each moment through their phones, computers, and other connected devices present such a dire threat to their privacy and autonomy. It’s hard to explain and doesn’t fit into the sound-bite friendly snippets favored in mass political communications. It’s much easier to understand— and subsequently, build a coalition to combat— the potential risk of unfettered access to (and use of) our DNA.

In fact, evidence suggests there’s already broad support for action on genetic privacy in the United States. DTC genetic testing companies have seen a significant slowdown in new tests and have been forced into layoffs; some experts attribute this to rising fears around genetic privacy. Maintaining protections for individuals with pre-existing conditions conversation is one of the few parts of the Affordable Care Act that even its most aggressive detractors were unwilling to touch because of its widespread popular support. Similarly, GINA was passed in 2008 with near unanimous support.

Conclusion

There appears to be room for political agreement on protections for genetic data, which would itself be a worth victory in the arena of personal data privacy. Perhaps more importantly, it offers an opportunity to draw attention to the broader conversation around the net, privacy, informed control of our most sensitive personal data.

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