This post was written by Adam Elliott, an intern on NTI’s Global Biological Policy Program team. Adam is a junior at Stanford University majoring in Bioengineering.
It took nearly 15 years and $2.7 billion dollars for scientists to conquer reading the first human genome. Today, through extraordinary technological innovation, the same task takes less than a day, and anyone can purchase a machine to do it for about $1,000.
As with many new technologies, sometimes innovation moves so quickly that those who develop it and those who use it don’t take enough time to consider the weight the innovation carries: how it will work in practice, what it means for humanity, and where it will go. Questions around the ethical use of this technology remain unexplored. The machines alone can do no harm, but how to handle the information they generate still needs some thought.
The NTI | bio team is exploring ways to advance the use of this technology for disease surveillance as part of global movements to improve biosecurity and prevent devastating disease outbreaks and pandemics.
Here’s the challenge: Next-generation sequencing technology offers a cost-effective and relatively easy way to read DNA, but the information generated can be sensitive. Sequenced DNA can carry information about ancestry, mutations, and hereditary illnesses. Many people actively seek out services that can read their DNA and provide information about their ancestry, and a growing commercial market readily provides this capability. Some new DNA sequencing machines are small and mobile, meaning that anybody can purchase one and they don’t even need a laboratory to use it. Right now, the mobile machines can only read sections of the human genome, but it eventually may become possible. Every single cell in every living thing on Earth holds genetic information, so all it takes is a prep kit – which some companies design for use anywhere in the world – and a small sample of cells to capture a readout of the DNA in any organism.
Because viruses carry their own unique genetic information, monitoring at-risk or early-stage outbreak populations for pathogens with next-generation sequencing gives public health workers the opportunity to quickly identify and respond to an infectious disease before it gets out of control. The idea is that a public health worker could gather blood or saliva samples from a sick or at-risk population, collect the sequence data from any microbes present, and check these collections against a database containing genomic sequence information from known pathogens. If the check returns a match, what is known about the pathogen can guide the deployment of medical countermeasures; if the check finds no match, public health personnel know to focus on a novel medical countermeasure for use against new threats. Similarly, genomic analysis could enable epidemiologists to track the origin of outbreaks and forecast the spread of the disease based on knowledge of where it has been.
Unfortunately, the new technology also allows rapid sequencing of the humans that might be infected with a given disease threat – information that can be very sensitive. Given the likelihood that technology companies will continue to develop easier and cheaper sequencing methods, it’s not hard to imagine a future in which people consent to giving up their genetic information in a more passive way, such as through a Terms & Conditions agreement for the latest cellphone app. This is a scary concept for several reasons, including that choosing to give up your own genetic information usually means you are also providing information about your family members – present and future. A future with virtually no genetic information control quickly begins to look like the basis for a dystopian novel. This prospect rightfully sparks concerns that the lack of norms on how to collect, use, and share this information will create serious privacy problems for future generations.
As of today, the World Health Organization has reported 84 individual outbreaks in 2018 alone – and data from the past few years suggest these kinds of outbreaks won’t slow down any time soon. Incorporating next-generation sequencing technology could catalyze major change in how the world is able to monitor for and respond to infectious disease outbreaks. NTI is exploring pilot projects to build global capacity for pathogen data collection, analysis, and sharing, while also exploring mechanisms for securing data streams generated by this technology..
As it becomes easier to read DNA, innovators, scientists, medical professionals, ethicists, security professionals, and users will have to think clearly about where to draw the line on collecting and sharing these data. Our children must be able to decide for themselves when and whether to share their biometric identifiers. At the same, that autonomy must be considered against the potential to use the technology to save millions of lives from a pathogen with pandemic potential – like a deadly strain of influenza or a disease yet to be discovered.