Science and Society: The Thousand Dollar Genome

Last year Heather Dewey-Hagborg became the world’s first DNA portrait artist. For her controversial art project Stranger Visions, she collected genetic detritus such as hair, cigarette butt saliva and sequenced portions of DNA from skin cells on the streets of New York City. After uploading the genetic data into a face-generating computer program, Hagborg created life-like masks with a 3D printer and put them on display.

The purpose of the piece was to provoke discussion on the potential uses and abuses of genetic information. “I had never considered the emerging possibility of genetic surveillance,” Hagborg explained. “The very things that make us human like hair, skin and saliva become a liability as we constantly face the possibility of shedding these traces in public space, leaving artifacts which anyone could come along and mine for information.” Although she couldn’t compare her attempts to real faces because the DNA was taken from strangers, she used her methods on herself and a few volunteers. The faces are similar, but by no means perfect matches, and some geneticists pointed out that it will still be years before the technology and our understanding of the genetics are sophisticated enough to use in forensic investigations.

But the artwork still potently illustrates how in the coming decades humans will have to make many hard decisions. In just the past decade there’s been a sudden and mostly unexpected exponentiation of DNA sequencing speed and drop-in cost.  The first human genome was finished in 2004 at roughly the cost of $3 billion.  One decade later the biotech company Illumina announced the first commercially available $1,000 genome. Genetic sequencing has advanced quicker than Moore’s Law. In the ten years since the genome was first sequenced, DNA base pair per dollar cost has increased tenfold per year, compared to a 1.5 fold increase in computer processing speed per year. The $1,000 genome represents a momentous milestone. Many geneticists herald it as the dawn of an age of personalized medicine, and believe that in the future everyone will have their genomes sequenced. We’ve passed a genetic watershed mark, and things are only speeding up. Will we use our newfound ability to read and write DNA for good, or will there be unintended negative consequences of the genetic revolution?

In an effort to improve our understanding of the flood of genetic information, numerous projects have been launched. Last year the U.K. announced a project to sequence the genomes of 100,000 individuals by 2019, focusing on people with rare diseases and cancer. The hope is to discover the genetic mutations responsible for their diseases, which will contribute to drug development and targeted therapies. China’s Beijing Genomics institute (BGI) has a quarter of the world’s sequencing ability, and has already sequenced 53,000 people. It recently launched the Cognitive Genomics Lab to investigate human neurogenetics. Their website says the lab is “recruiting subjects” and exhorts “If you are cognitively gifted, we encourage you to participate!” Their volunteer page further specifies the requirements. Applicants must have “An SAT score of at least 760 verbal/800 math” and “a PhD from a top U.S. program in physics math, electrical engineering, or theoretical computer science.” BGI and the U.K. genome project are just two of numerous bioinformatics projects aimed at decoding the significance of our genes.

Our sequencing capability, understanding of genetics and competence with biotechnology are growing exponentially. We will have to confront discomforting and divisive bioethical issues with greater frequency and consequence. Since the 1960’s, a parade of issues has passed before the public. First debate raged over in vitro fertilization, birth control and genetic recombination technology. Today these technologies are commonplace and carry little stigma. More recently, conflict has arisen over topics such as GM crops, cloning, preimplantation genetic screening, stem cell research, synthetic biology, genetic surveillance, bioterrorism and gene therapy. In our lifetimes there will be a new host of graver issues to address.

People are already divided on these issues. There are bioconservatives and technophiles, libertarians and statists, the religious and the secular. These issues elicit strong reactions and emotions because they challenge our notions of what is sacred, what is natural and what is human. If bioethical debates only get more vitriolic in the future, we need to better discuss the coming changes and advances and improve our ability to make decisions about what to allow, regulate or prohibit.

Unfortunately, it takes time for ideas to percolate through society, and scientific advances are often unveiled on short notice. Technology is advancing at an exponential rate, and we have relatively less time to discuss more consequential issues. Most dishearteningly, our democracy appears to have lost its ability to make collective decisions. As Middlebury students we have a responsibility to facilitate this discussion. This is a task not just for the scientifically inclined. Artists can explore our emotional reactions to these advances, political scientists our policies toward them and economists our economic systems that drive them. Scientists should not only dedicate themselves to good research, but also to understanding the implications of their research and communicating it to the public. I’m optimistic about the benefits of the genetic revolution and excited about future treatments and cures. But we need to get better at discussing and deciding these ethical questions if we are to safely navigate the future of this technology.